“I’m trying to figure out who the hell I am”: Examining the psychosocial and mental health experience of individuals learning “Not Parent Expected” news from a direct-to-consumer DNA ancestry test

Abstract

Background

According to recent estimates, around 30 million people have taken Direct-to-Consumer DNA ancestry tests, typically marketed as a fun, harmless and exciting process of discovery. These tests estimate a user’s ethnic ancestry, also matching users with biological relations on their database. This matching can produce a surprising ‘not parent expected’ discovery, where a user learns that an assumed parent (typically the father) is not a biological parent. Such news may negatively affect mental health, self-identity and familial relationships, while prompting the utilization of putatively helpful resources by affected individuals. However, there is a lack of research on this topic. Thus, this study aimed to document the psychosocial experience of adults who have learnt that an assumed parent is not a biological parent via a Direct-to-Consumer DNA ancestry test. Specific objectives include investigating and understanding impact on mental health, familial relationships and subsequent resources mobilized.

Methods

To meet these objectives, we conducted an inductive qualitative study, allowing for the documentation of common experiences and perspectives. This involved 52 semi-structured interviews with affected individuals, analyzed using thematic analysis.

Results

This resulted in five overlapping themes, namely (i) participants typically described their experience as an extraordinary shock that had a negative impact on their mental health, with some exceptions; (ii) the experience typically led to a severe and troubling disruption of their self-identity, with some exceptions; (iii) the news often ruptured extant familial relationships, especially with the mother, and any experiences with the new biological family were mixed; (iv) participants sought support from a variety of resources including spouses, siblings, and online peer support groups, which were generally considered helpful, with some exceptions; and (v) many participants consulted mental health professionals, who were sometimes considered supportive, but some participants noted that they were ill-equipped to help. Common across these themes were issues of grief, loss and trauma.

Conclusions

This study reveals an expanding, vulnerable, and under-researched population facing unique stressors, that may be at high risk of developing a psychiatric disorder. There is a need for new services and supports for this population including tailored clinical interventions and specific self-care resources.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12888-024-06380-0.

Background

According to recent estimates, around 30 million people have taken at-home Direct-to-Consumer (DTC) DNA ancestry tests [1]. For a fee, individuals can order a testing kit from a company such as Ancestry DNA and 23andme. Once received, the individual then spits into a vial and sends this back to the company, which uses the DNA to compute diverse pieces of information that are shared with the individual via a secure internet portal. This is sometimes known as recreational genetics; and is typically marketed as a fun, harmless and exciting process of discovery.

These tests typically provide three pieces of information to the consumer. First, they estimate the consumer’s ethnic heritage. Second, they estimate certain phenotypical characteristics and risk of certain health outcomes. Third, they compare the consumer’s DNA profile with all the other profiles in their databank, computing and presenting any biological relationships between users.

The accuracy of ethnic analysis in these tests is unreliable and subject to a considerable margin of error [2, 3]. Moreover, some experts have questioned the use of such genetic tests to determine complex constructs such as race and ethnicity [4]. Nevertheless, the identification of immediate family relations such as parent-offspring relationships is extremely accurate and almost perfectly reliable, with a negligible risk for either false positive or false negative results [3].

All these pieces of information are shared with the consumer. For the biological-relatedness analysis, this leads to a list of matches stating the username and biological relationship (e.g., father, half-sister, daughter, etc.) of genetic relatives in the database. This process can throw up sudden, unexpected and shocking news for consumers. For instance, it can involve failure to match with close family members on the database who were assumed to be blood relations [5].

But perhaps the most shocking surprise that can be revealed by such tests relates to ‘Not Parent Expected’ (NPE) news. This refers to cases where an individual learns that an assumed parent is not a biological parent [6]. By far the most common NPE scenario is the discovery that an assumed father is not the biological father, known technically as ‘misattributed paternity’. Such a discovery could be related to various scenarios such as (i) sperm donation; (ii) adoption; (iii) rape; (iv) babies accidentally switched at birth; and (v) maternal infidelity.

All this raises the question, how many people are affected by such NPE news? Guerrini et al. [7] conducted a large-scale survey (N = 23,196) of people who had used DTC DNA ancestry tests to understand the prevalence of discoveries and associated experience. This survey found that 3% of users had learnt that a person they believed to be their biological parent is not their biological parent. This is consistent with the most rigorous population estimates of misattributed paternity, which are currently believed to be around 2% in Western populations [8–10]. Given that around 30 million people worldwide have taken DTC DNA ancestry tests, it is conceivable that close to a million people may make an NPE discovery from such testing. However the psychosocial experience of this population remains considerably under-researched [11].

To our knowledge, very few studies have been conducted which are relevant to this population. One includes the aforementioned Guerrini et al. [7] survey, exploring the experience of people who had taken a DTC DNA ancestry test. This survey found that 61% of consumers reported learning something new about themselves (such as health, ethnic or familial information) and that this information was generally considered neutral or positive by respondents. However stratified analysis revealed that participants learning NPE news reported the most negative consequences for self, including higher rates of endorsing items such as “I feel worse about myself” and “I no longer feel like myself”.

These findings overlap with another relevant survey (N = 731), this time focusing solely on individuals who had discovered misattributed paternity via a DTC DNA ancestry test [12]. Interestingly, this survey found increased levels of depression, panic and anxiety symptoms among those receiving NPE news, compared to matched controls. Both these surveys indicate that an NPE discovery may be damaging to mental health and that the NPE population may be at high risk of developing a psychiatric disorder. However these studies lack qualitative data on resources and strategies that participants used to mitigate resultant distress, such as the different forms of mental health treatment, as well as their subsequent impact in aiding the situation.

Interestingly, two recent qualitative studies present similar conclusions as the above-described quantitative studies, despite using a different methodology [13, 14]. Both these qualitative studies set out to assess the wider experience of individuals learning misattributed paternity news from a DTC DNA ancestry test, finding that such news often led to distressing reactions and emotions including shock, sadness, grief, loss, betrayal, shame, isolation and anger. These studies focused on resultant emotions, but again there is a lack of information presented about resources and strategies used (and their resultant impact) to mitigate distress.

All these findings are consistent with a wider psychiatric and sociological literature indicating that major unexpected shocks and sudden life events can negatively impact mental health [15–17]. Indeed, such unexpected shocks can lead to what is known in the sociological literature as a ‘biographical disruption’ [18, 19]. A biographical disruption refers to a psychosocial process that can occur after a serious and unanticipated event that may (i) disrupt taken for granted assumptions; (ii) lead to a fundamental rethinking of the person’s biography and self-concept; and (iii) instigate a response including health service utilization and the mobilization of other resources.

Much research about biographical disruption occurs in the context of the onset of chronic illness such as cancer [20, 21], HIV [22, 23], or other long-term conditions [24, 25]. However, other research indicates that biographical disruption can occur in relation to surprising familial news and events. For example, the adoption literature indicates that learning about adoptee status can lead to a disruption of taken for granted assumptions and a fundamental rethinking of biography and core identity [26, 27]. This can lead to a sense of loss and grieving [28]. Indeed, such existential concerns have been linked to elevated rates of psychiatric disorder observed in adoptees [29, 30]. That said, this literature also indicates that adoptees do not simply passively receive the news. Instead, they attempt to reconstruct their sense of self and improve their mental health through a variety of activities including use of therapy, as well as finding and utilizing various other supports [27, 31].

In sum, the existing corpus of research suggests that learning about NPE news via a DTC DNA ancestry test may (i) raise intense existential and psychosocial issues; (ii) disrupt family relations and adversely affect mental health; and (iii) lead to an active response from individuals, such as utilization of health services and other resources. This latter variable has been under-researched in the existing NPE literature and is central of the present study, as are issues around mental health, self-identity and familial relations. Thus, the overarching aim of this study is to document the psychosocial experience of adults who have learnt that an assumed parent is not a biological parent via a DTC DNA ancestry test. Specific objectives include investigating and understanding the short and long-term impact of learning such news on (i) well-being and mental health; (ii) familial relationships; and (iii) subsequent resources mobilized.

Methods

Due to the lack of literature on this topic, we set out to conduct an inductive qualitative study, allowing for the documentation and analysis of bottom-up and nuanced understandings. This is recommended practice when the aim is to document perspectives and experiences in an under-researched sub-population in an emerging domain [32, 33]. Standard procedure in such inductively driven studies is to avoid formal hypothesis testing, while eschewing the adoption of a guiding theoretical framework [34, 35]. This is because such frameworks can contain assumptions and may lead researchers to examine phenomena through a narrow lens that biases them in both data collection as well as data interpretation [33]. Instead, the aim of an inductively-driven study is to examine the topic through a broad lens, while collecting data with a neutral and open mind, thus taking advantage of the flexibility and openness to surprise that is core to an inductive epistemological approach [33, 36, 37]. As such, this study does not employ an overarching theoretical framework, consistent with inductive epistemology. That said, the study proceeded mindful of the various concepts and background literature discussed in the introduction, for example the potential impact of biographical disruption on the mental health and self-identity of affected individuals.

Recruitment and participants

We set out to recruit adults who had learned NPE news from a DTC DNA ancestry test, using a multi-pronged approach to prevent bias associated with over-reliance on a single method of recruitment [38, 39]. First, the research team collaborated with the NPE Friends Fellowship to advertise the study. The NPE Friends Fellowship is the largest and most prominent NPE peer support community, with over 12,000 members in the US, Canada and elsewhere. They posted information about the study to their Facebook groups. Of note, this organization rebranded itself in 2024, and changed its name to the NPE Network, but was known as the NPE Friends Fellowship during the study. Second, the research team made a concerted effort to raise awareness about the study in the Canadian media, sending out press releases and individual emails to journalists who may be interested in the research project. This strategy was successful, and the last author conducted interviews for many major media sources including CTV, Global News and the Montreal Gazette, inviting affected people to contact him via email. Third, we contacted clinicians who work with this population, requesting them to raise awareness of the study among their clientele. Notably, we received the support and collaboration of Watershed DNA, a clinical service devoted to helping people who have received unexpected DNA discoveries such as NPE news. This clinic advertised the study on their website.

Inclusion criteria were as follows: (i) received NPE news via a DTC DNA ancestry test, learning that an assumed parent is not a biological parent; (ii) must be aged 18 or over; (iii) able to give informed consent; (iv) speak either English or French. All participants had to meet all criteria. Exclusion criteria were the counterpart of the inclusion criteria. All participants gave written informed consent, and the study protocol was reviewed and approved by the Research Ethics Board of the CIUSSS de l’Ouest-de-l’Île-de-Montréal.

Procedures

All participants took part in a one-time in-depth semi-structured qualitative interview. This qualitative interview was driven by a topic guide that included several key questions (see supplemental file). Introductory questions were intended to elicit the participant’s story, including questions such as “tell us your story of NPE discovery”, and “who have you shared this news with”. Follow-up questions intended to focus on experiences and perspectives related to our study objectives, including questions such as “how has this experience affected your family relations?”, “what impact has this had on your well-being and mental health?”, and “how have you dealt with this experience?”. These questions were posed neutrally, and we used follow-up probes throughout. For example, if a participant had met any member of the new biological family, we asked them to describe this experience. We asked for illustrative examples throughout the interviews.

The last author is an experienced qualitative researcher with over 20 years experience conducting qualitative interviews. He taught interviewing techniques to the first author, who also attended interviewing workshops and graduate-level university courses in qualitative research. The first five interviews were conducted by the last author with the first author attending and observing as part of her training. Further interviews were conducted by the first author, with the last author in attendance for supervision and support. For some interviews, the last author was unable to attend, and the first author was accompanied and supported by a second interviewer, who was a trained qualitative research assistant. The interviewers had no relationships or interactions with participants prior to the study commencement, however all participants had read and signed an informed consent form, which gave them some background information about the study.

All interviews were held on Zoom, except for one which was held over the telephone. Participants were given the choice to conduct their interview in French or English; all but one chose English. The interviews were on average around one hour long, lasting between 35 min and almost three hours. All interviews were audio-recorded and transcribed into Word documents, and participants were sent a $50 gift card as compensation for their time.

Additionally, all participants completed a short socio-demographic questionnaire consisting of simple questions eliciting the following: age, sex, education, employment status, and time since learning the surprising familial news from a DTC DNA ancestry test. This gave us further interview prompts, and basic sample characteristics which are presented in the results.

Research team and researcher positionality

It is important to document researcher positionality and the research team per se, as this gives useful information on the perspectives, experiences and potential biases that researchers can bring to a study. Importantly, we strove to ensure a variety of perspectives in the research team, to ensure heterogeneity in important variables such as disciplinary background, insider-outsider status, occupation, age and sex. This can prevent bias associated with a homogenous research team, and again is consistent with the inductive epistemology adopted in the present study. In sum, the four authors comprised two men and two women, including two professors, one graduate student and a community member with a background in education, self-help and advocacy. Two team members are based in Canada, one in Belgium, and one in the USA.

The first author was a graduate student in psychiatry during the study, with a particular interest in family dynamics and family therapy, especially the experiences and challenges faced by individuals within the NPE community. The second author is a university professor and genetic genealogist who has written widely about the social aspects of genetics, particularly regarding misattributed paternity and NPE discoveries via DTC DNA tests [40, 41]. The third author is an advocate and leader in the NPE community, and has dedicated herself to creating resources and fostering support, most recently as CEO of the nonprofit NPE Network. Finally, the last author is a university professor in social psychiatry with decades-long experience researching the link between mental health and issues related to reproduction, parenting, and fertility; and has led several qualitative research projects on these topics [42, 43]. None of the authors are members of the NPE population. However, the third author had a personal experience with an NPE discovery in her family that has profoundly influenced her journey, enabling her to bring empathy, understanding, and expertise to her work with this community. This means that the research team had some level of insider knowledge and status regarding the NPE population, which has been identified as a desirable position for building rapport and eliciting authentic perspectives from participants, while maintaining some distance and neutrality for the analysis and dissemination [44, 45].

Analysis

The analysis was propelled by the thematic analysis approach as outlined by Braun and Clarke [35]. This involves formally identifying and coding common themes through immersion in the data, sometimes using a mix of deductive and inductive codes. To ensure focus, we pre-defined some codes related to the research questions when analyzing the data, including (i) impact on family relations; (ii) impact on mental health; and (iii) support and resources sought in response to the news. Following standard procedure, other codes were added inductively during the ‘data immersion’ phase by the first and last authors, who relistened to sound files and closely read the interview transcripts, while meeting regularly to discuss the coding.

Once the incipient coding schema was agreed upon, all interview transcripts were imported into MAXQDA, a computer assisted qualitative data analysis software for systematic analysis [46]. The first author then coded each interview, allotting paragraphs (or more) of text into the appropriate codes. Again, the first author was closely trained and supervised by the last author in this process. In line with standard procedure, the codes were used as building blocks for wider themes [35]. Specifically, at the end of the coding process, we assessed which codes were most prominent and possessed the most explanatory power in relation to our study objectives. Overlapping codes were then grouped into wider themes, which form the basis for the results sections below. In this process, we deliberately searched for outliers and perspectives that diverged from the main thrust of the incipient themes, which are reported in the results in the interests of disclosing the full range of responses gathered from participants. This is consistent with recommendations to increase the transparency and comprehensiveness in reporting qualitative research contained in well-utilized guidelines such as the COREQ checklist [47].

As is standard procedure in ethnographic research, the qualitative data was not precisely quantified. As such, precise numbers of individuals who mentioned a theme are not given, however a sense of the theme’s significance in the data is provided by use of descriptive language in the text that summarizes the prominence and meaning of each theme.

Results

These procedures resulted in 52 in-depth interview participants, with demographic details given in Table 1 below. This large sample size facilitated the distillation of common themes, while also ensuring that outlier perspectives could be properly collected and documented in the results. Most participants were women, middle-aged and based in Canada. In all cases, participants learnt that their assumed father was not their biological father, with only one person learning their assumed mother (as well as their assumed father) were not their biological parents.

Table 1.

Characteristics of sample

Characteristic	Total number (N = 52)
Age in years, mean (SD, range)	47.4 (12.9, 27–74)
Sex, n (%)
Female	36 (69.2)
Male	16 (30.8)
Education level, n (%)
High school	4 (7.7)
College	10 (19.2)
Bachelor’s	19 (36.5)
Post-graduate degree	11 (21.2)
Unknown	8 (15.4)
Employment status n (%)
Employed	39 (75.0)
Unemployed	5 (9.6)
Student	2 (3.8)
Retired	6 (11.5)
Country of residence, n (%)
Canada	32 (61.5)
United States	17 (32.7)
Other	3 (5.8)
Marital status, n (%)
Married	34 (65.4)
Single (never married)	7 (13.5)
In relationship	6 (11.5)
Divorced or widowed	5 (9.6)
Time since NPE news in years	2.6 (SD 1.8, range 0.2-7.0)
Conception story, n (%)
Maternal infidelity	22 (42.3)
Sperm donor conceived	12 (23.1)
Other	18 (34.6)

Almost half of the participants noted that they were conceived through their mother having a secret extra-marital liaison, while around a quarter were conceived via sperm-donation. The other category included a variety of cases such as (i) conceived by a one-time sexual encounter or a very brief relationship, followed by a wedding to another man who knowingly agreed to raise the child as his own, or was not aware that the mother was pregnant and assumed the child to be his own (n = 8); (ii) parents taking a marital ‘break’, with the mother conceiving by another man during this break (n = 2); (iii) the mother having parallel sexual relationships at the time of conception, mistakenly assigning one man as the biological father (n = 2); (iv) parents lying to their adopted child about the biological father’s real identity (n = 1); (v) adoption kept secret from the offspring (n = 1); (vi) conceived during partner-swapping sex (n = 1); and (vii) unknown conception story, mainly because biological and assumed parents had passed away (n = 3).

The analysis resulted in five themes, presented below, namely (i) mental health- participants typically described their experience as an extraordinary shock that had a negative impact on their mental health, with some exceptions; (ii) self-identity- the experience typically led to a severe and troubling disruption of their self-identity, with some exceptions; (iii) family relationships- the news often ruptured extant familial relationships, especially with the mother, and experiences with the new biological family were mixed; (iv) social and peer support- participants sought support from a variety of resources including spouses, siblings, and online peer support groups, which were generally considered helpful, with some exceptions; and (v) mental health professionals: many participants consulted these professionals, who were sometimes considered supportive, but some participants noted that they were ill-equipped to help.

The first three themes capture the common impacts experienced by participants after learning about their NPE status, while the last two themes capture common resources mobilized after such news. Each theme is presented below in five different sub-sections in order of importance, determined by the frequency and intensity of its discussion and presentation in the dataset both within-individuals as well as between-individuals. In sum, these themes represent broad patterns in the data reflecting experiences that were regularly and frequently mentioned by participants.

For each theme, there were a minority of outliers whose experience differed from the majority. Their perspectives and experiences regarding the main topic of the theme are presented at the end of each sub-section. This approach ensures that content that is relevant to the principal topic covered by each theme is summarized therein, even though it may deviate from the main thrust of the theme. Scaffolding of the results in this manner was judged expedient as it facilitates the flow of the paper while allowing for ease of reading. All quotes are verbatim, though some identifying details have been changed to maintain participant anonymity.

Theme one: Mental health- participants typically described their experience as an extraordinary shock that had a negative impact on their mental health, with some exceptions

One of the core themes is related to mental health. Specifically, participants typically described the experience of learning NPE news as an extraordinary shock that had a profoundly negative impact on their mental health, in both the short term and the long term.

For example, one participant stated: “I had a complete mental breakdown and took off a month from work” (P35), while another stated: “I was devastated. It’s like- it was like losing a part of you, so you, you know, I instantly was depressed” (P20). Others used vivid and dramatic imagery to describe the initial impact, for example, “it’s like getting punched in the stomach, right?” (P41), “It felt earth shattering” (P07), and “I had a very visceral reaction at the beginning” (P31). This negative impact is further illustrated in the quote below, from a 60-year-old man recounting his initial reaction to the news:

I’m trying to figure out who the hell I am, and I’m- you know, doing research, and everything I can, but I’m lost. I’m just- I- you know, I don’t wanna say I was a wreck, but I was just empty inside. You- you know, and it was just a- a devastating blow. (P41)

In addition to the initial negative impact, many participants stated that the experience led to long-lasting impacts on their mental health. Some stated that the shock of the news (and the resultant psychosocial aftermath) contributed to the onset of discrete psychiatric disorders, such as anxiety, depression and PTSD. For example, one participant noted that she was “having panic attacks every day and experiencing extreme anxiety” (P35) meaning she had to take extended leave from work, a common predicament seen in other participants. Such long-term negative impact on mental health and everyday functioning was discussed by other participants, including a 38-year-old man below:

I would zone out all the time. My feet would shake uncontrollably at, like, at all hours. I had a hard time leaving my house. I would go from zero to a hundred like in no time. And- and it was last- it was around this time last year I started seeing a- a clinical psychologist for a- a full assessment. And, you know, this whole- my NPE experience left me with PTSD. Like, that’s what I- I have to manage it every day. (P52)

Interestingly, a substantial number of participants used the language of bereavement to describe their experience, prominently discussing feelings of grief and loss during the interviews, with one participant stating that “for me the overwhelming feeling was just grief. Grief and loss” (P27), while another stated: “I equate this experience to the loss of my father or death of other close loved ones. It’s felt that same kind of magnitude and grief attached to it” (P31).

The object of the grief was varied. For some, it stemmed from the loss associated with suddenly learning that one’s assumed family was not their biological family, with one participant stating “it’s like grieving… for a father that really wasn’t my father. And it’s just this feeling of being lost” (P03). For others, the loss and grief were related to learning about a biological family that they had never met, and maybe never will meet, with one participant stating, “people that I’ll never meet, like grandparents I’ll never meet, and know what they were like or know their love” (P18). For others, the grief was related to loss of aspects of the self, as expressed by this woman in her forties:

It is the worst feeling in the world. It is harder to deal with than the death of um, a family member. Because you’re not grieving for somebody else, you’re grieving for yourself. You’re grieving for everything that you’ve lost. You’re grieving the life that you used to have. (P25)

Several participants discussed new physical health issues arising from the NPE discovery, which in turn negatively affected their mental health. Some learnt about serious genetic conditions in their new biological family, creating fear and concern. For example, one participant described his new fears of being a carrier for a Mendelian disorder, saying “I know I need to bite the bullet and go get checked [but] I’m honestly very scared to, knowing that there’s… a high percent chance that I could be affected” (P20). Other participants described feelings of mental distress due to the uncertainty surrounding their family medical history, and participants with children seemed especially concerned about lack of knowledge in this regard. For example, a mother stated that:

I really want my medical history. I really want any cancer history. You know, if I should be screened for something early, that’s something I’m probably never gonna get. And the- the, in- like the injustice of that really pisses me off still. Probably because I have babies and if there’s something wrong with my kidneys, will there be something wrong with their kidneys one day? We don’t know. (P15)

The vast majority of participants noted that learning NPE news had a negative impact on their mental health, often involving grief, loss and an element of trauma. That said, a minority of participants described some positive effects on mental health. This was sometimes due to relief in learning that assumed family (with whom there were fractured relations) were not biological family. For example, a 45-year-old woman stated that: “this might sound really terrible, but to find out that the man that raised me isn’t my biological father, has actually given me some relief, in a way, that that is not in me” (P18). Others who had met and been welcomed by their new biological family sometimes mentioned positive gains associated with this process, with one religious participant stating “God has given me another father. I’ll take it” (P45). Similarly, a 35-year-old man who learnt that his assumed father (who had been absent from his life) was not his biological father stated that:

So, I felt more secure in who I was, I would say. And because I really like him [the biological father] and his family and everything, it’s been also really nice to just have those people in my life. So, it’s been a positive thing. A lot of positive emotions. Always happy to talk to them. I feel like I’ve got a new, sort of, family I can rely on. (P24)

Theme two: Self-identity- the experience typically led to a severe and troubling disruption of their self-identity, with some exceptions

Most participants stated that the experience led to a severe and distressing disruption of their self-identity. Again, dramatic language was used, with one participant stating that “it’s been a pretty big bomb in… it’s kind of blown up my identity” (P37) while another stated that “it robs you of your whole sense of self and the way you relate to the world” (P52).

Indeed, participants frequently reported that learning NPE news provoked a set of intrusive, disruptive and confusing ruminations regarding sense of self. This sometimes led to a sense of dissociation, with one man in his fifties stating that he felt “a profound sense of dislocation. Um, not physical dislocation, but kind of dislocation from… who I am, who I thought I was, just because of the- the new information” (P32). Similarly, a woman in her sixties stated that:

I just started trying to figure out you know, who the hell I was, because I didn’t know. And nobody had any answers. And it was very um… I guess… identity disruption is probably a good word for it, because I felt like half of me had just been sucked into a hole, and I didn’t know who I was, you know? (P19)

Several other participants mentioned that they felt they had lost “half of themself” after learning about their NPE status, which caused significant distress. One woman in her forties stated that: “half my family tree has been wiped out and replaced with strangers, that if I was walking down the street, I wouldn’t know who they were” (P25) while another stated that “I don’t know half of my identity… It was disorienting” (P28).

Consequently, participants often asked themselves profound existential questions about their identity, which could consume considerable psychic energy. For example, participants reported asking themselves questions such as “are you still you?”, “who am I made up of?”, “does this make me a different person?”, and “should I be trying to reconnect with my ethnic ancestry?”. But the most common question asked by many participants was “who am I?”, with an extended example given in the quote below:

It’s just the unknown of identity, like, who am I? That has been really difficult the past few months. Um… it’s like everything just fell off under me, and now I have to refigure- like, I know- I know who I am, like, the person I am and what I believe in and all that, that I know. But… (sighs) just there’s half of me that is now missing. (P38)

Interestingly, some participants stated that these questions came to the fore when looking in the mirror, which became a painful and perplexing experience for many. For example, one participant had met her biological father, and said that “seeing someone else’s face [in the mirror] is extremely jarring, whereas previously I just saw myself, like, now I see his [the biological father’s] face” (P37), while another noted that “I actually have been having, like- I don’t know if this is a thing, but, like, face dysmorphia. Like, not recognizing my own face” (P35). All this is summarized in the extended quote below, from a woman in her twenties:

Like, honestly for the first like, couple weeks, every time I looked in the mirror, it was- it was hard. I was like, well, where did I get this feature from? You know, that’s why I look so different. Looking at myself, it was just, it’s such a surreal thing. I- I- to even explain it, it’s just, it’s so weird that you look at yourself in the mirror, and you’re like, it’s hard to look- I don’t know, it was like, who- who is that? You know? Yeah, it was definitely an identity crisis for- for a couple weeks. (P47)

Another disruptive experience was learning about changes in ethnic and religious heritage, which occurred for many participants in the sample. This included the shock of learning about a new heritage where none existed before, with one participant stating that “it’s knowing that um… (crying) I’m 50% Jewish, and I know nothing about the religion or the culture… where I come from, 50% of me, I know nothing about” (P25). It also included the shock of learning that an assumed heritage was not genealogically present. For example, one participant learnt that her biological father was Brazilian and not Indigenous Canadian (as previously assumed), leading to a sense of loss and confusion:

I really had it set on my identity of being an Indigenous woman. Um, so now, you know, in my thirties, I’m like I’m Brazilian? Like, I know nothing of the country Brazil… I feel very awkward about going to Indigenous events now, and you know, once a very proud Indigenous woman now I’m like “Oh!”. I don’t know what I am and I now don’t go to pow-wows, I don’t go to um, certain events I guess, ‘cause I’m just in the middle of a, I guess, ethnicity identity crisis. (P15)

Most participants described the identity issues arising from the NPE news as distressful, especially in the short term. However, some individuals mentioned some positive impacts. First, some participants stated that they had joyfully embraced aspects of their new ethnic identity, for example by traveling to their ancestral homelands, or learning their ancestral language. For example, a woman stated: “I have felt more of a sense of pride around the green eyes and blonde hair… I feel called to go and put my feet into the earth, where my ancestors were” (P11) after learning about her Scandinavian roots, while another participant joyfully reported that: “I eat more pasta, I started listening to some Italian music” (P04), after discovering his Italian ancestry.

Second, some participants noted that the initial turmoil was followed by a healing journey, which often led to a sense of peace with their new reality with the progress of time. For example, one donor conceived participant stated that she now interpreted the NPE news as “a pretty big gift… it made me braver and stronger in the end… it made me appreciate family um, for being not just blood” (P19), while another stated “It was definitely just a sense of inner, like, I guess, a stronger inner- inner sense of self, maybe, that I got from all of this” (P24).

Theme three: Family relationships- the news often ruptured extant familial relationships, especially with the mother, and experiences with the new biological family were mixed

During the interviews, many participants stated that learning NPE news had ruptured extant relationships with members of their pre-existing family. For example, one participant stated that “I think the worst thing that happened through this whole thing was the turbulence in the family that it caused” and that “it really, really disrupts the family unit” (P03).

Interestingly, many participants reported that learning NPE news had a particularly damaging impact on their relationship with their mother, especially in cases where they had been conceived through marital infidelity or other secret liaisons and the truth had been hidden. For example, a woman in her forties who was conceived when her mother was having parallel relationships stated: “I would say that it has decimated my relationship with my mom” (P21), while one in her thirties (whose mother had had a secret affair unbeknownst to her husband) described her fractured relationship with her mother, saying: “we do joke now that like, I have two dads, and no mom” (P48). Participants frequently mentioned that the harm and hurt derived from the fact that their mothers had lied to them (and sometimes their assumed father) for decades, keeping an essential part of their conception story, paternal parentage and core identity secret. This had subsequently destroyed trust and caused a deep rupture. For example, one stated that “I can’t trust anything she tells me anymore. I mean, she lied to me for 41 years” (P25), while another woman in her fifties stated that:

…the anger that I felt about my mom, it really did damage our relationship in a lot of ways. And even now, I don’t think the same way about her. And it’s not so much that she cheated. It’s that she lied to me, I guess. That really was the hardest thing. (P13)

Several participants also described being blamed for the NPE situation by their mother or their (assumed) father, who sometimes argued that the participant should not have taken the DNA test in the first place, stating that they were responsible for opening a Pandora’s Box. Again, this caused severe distress and further familial fracture. For example, one participant stated that “It’s all my fault in their [the parents] mind. I think my dad, one of his things, was telling me I went about it in the wrong way. So yeah, the blame all kind of came on to me” (P11), while another internalized such blame, stating that “it felt like I was ripping the family apart, even though it wasn’t my fault, and I never asked for any of this, it really did feel like it was because of me that things would never be the same” (P25).

In some cases, participants mentioned that the wider family had been privy to their NPE status and had been complicit in keeping this secret. This ruptured wider familial relationships. For example, one participant described cutting ties with a (half) brother she was raised with, as he had been privy to her NPE status but never shared the secret: “it’s destroyed my relationship with him. I don’t trust him, I can’t. I cannot have contact with him right now”, going on to say:

Knowing that my entire family was aware, and um, kept the lie, uh, has shaken my trust in my family. But just also in general. Just in the world around me. Um, I’ve- I’ve gone no contact with all of them right now, because I just, I don’t feel safe with them. I don’t feel that I can trust any of them. And so like, I’ve lost the family that I know. (P18)

Participants occasionally noted some positive changes in maternal relationships with the passage of time and process of healing, with one participant stating that “me and my mom we’ve become closer, because now, now we’ve found this happy middle ground of just having a more open relationship, more supportive” (P07). Others mentioned that the news gave them a new and deeper appreciation of their (assumed) father, who had loved and raised them despite no genetic relationship. For example, a donor-conceived woman in her twenties, stated that:

My relationship with my dad has gotten better, because it feels like I can appreciate him for who he truly is in my life now, versus forcing something that I tried to because it’s like- if I thought we shared genetics, why aren’t we more alike? Why isn’t this happening? Versus now it’s like, we don’t share genetics, and that’s fine. Because we don’t have to have things in common for me to appreciate him and love him as my dad. (P28)

On a different note, some participants reported establishing meaningful relationships with their new biological family, which typically had a very positive impact. Many participants singled out their new relationship with their biological father in this regard, with a woman in her forties stating that “I am already closer and more connected to my biological father than I ever was my birth certificate father. He understands me and knows me better than my birth certificate father ever could” (P44). A similar experience was shared by a man in his thirties:

When we met, it was just one of the strangest experiences of my life, probably. It was like- we were just so similar in so many different ways, um, without having ever known each other. Like, mannerisms, just, speech, the way we look, of course, and, kind of, preferences, communication styles, just, personality type energy levels…I would say there was sort of, like, a kindredness between us from the beginning. (P24)

Others mentioned that they had gained new siblings from their new biological family, which again had positive effects. For example, one donor conceived participant said: “the only positive has been…all these half-siblings, I’ve got to reach out to some and connect with some, and meet some…which has been really nice” (P47), while a 35-year-old man discussed his half-sister: “it was a little bit absurd, I had just met her, we had spoken maybe two or three times…and she was already someone I shared a lot more interests with than my own sister” (P51).

That said, some participants reported being shunned or blanked by the biological family from the get-go, while others had been rejected or ghosted after a few contacts. For example, a woman in her forties stated that “there’s a half-sister in Alberta. She- I messaged her, she thinks I’m crazy and that it’s all a lie and really just ghosted me immediately” (P15) while another said: “I contacted him [the biological father] and he wrote me one or two emails and he was very cold… like not encouraging of the relationship… And then, shortly after that, suddenly the communication got shut off” (P12). A small minority of participants reported being rejected by both the family they grew up with and their new biological family, evoking feelings of double rejection. For instance, a 45-year-old woman stated: “all the people who conceived me like completely turned on me” (P11).

Participants typically reported that rejection by the biological family was deeply distressing, sometimes reusing the language of grief and loss. For example, one participant whose mother had had an affair mentioned that “I was rejected by the biological family, so you know there’s a lot of grieving that happened in this period of time” (P04), while another said: “it still hurts when you’re going through it, it still becomes a- a little source of pain when you- when you pick up the phone and you go, he’s [the biological father] not gonna answer” (P34). Similarly, a 38-year-old donor-conceived participant recounted the moment when his biological father cut ties with him:

He was staying at our house and he just said, he goes, ‘I think it would just be best if I left’. And he packed up his things and he- and he was gone within about five minutes… and it was- that was devastating… I just thought that, like, there was another- here is another loss to work through… cause I did look at him as a second chance of like a healthy- healthy family. (P52)

Theme four: Social and peer support- participants sought support from a variety of resources including spouses, siblings, and online peer support groups, which were generally considered helpful, with some exceptions

So far, the results have focused on the impacts of learning NPE news. At this stage, we will turn our attention to the resources mobilized by participants to deal with the above-described impacts. Participants frequently mentioned two types of helpful interpersonal support: (i) social support from people such as their spouse, siblings, and friends; and (ii) peer support from individuals who had already experienced NPE news. These are covered in turn below.

Over half of the participants in the sample were married, and most of those reported that their spouse was one of their main supports in dealing with this unforeseen situation. For example, one participant said that “I think the spouse, to me, is a 100% the most important support” (P04). Several participants described their spouse as their “rock”, including a 44-year-old woman saying: “my husband is like- he’s like my rock, my right-hand man” (P05). For some, being able to talk freely to their spouse was highly beneficial, with one woman stating: “I am so appreciative of him being there and open and he’s so empathic, so I think that’s what’s really helped as well. That I felt safe in these conversations” (P07). Similarly, a man in his sixties said:

I have an extremely supportive wife. And- and she wanted to help me as much as she could through it. You know, I- um, and I think as for someone that… doesn’t- that never had anything like this happen, and she’s as supportive as they could be. So- and when I did open up, I mean, she’s there for me. (P41)

Many participants also noted that their siblings offered helpful social and emotional support. For example, some participants mentioned that their siblings provided needed reassurance that their relationship would remain unchanged. For example, a woman in her fifties stated:

Having um, my brother and like, still- you know, unconditional love from my brother and sister, that’s helped, because I think if they had just said- ah…you know? There’s no difference between us now that- or from years ago, right? So it’s still the same, which has helped. (P08)

Interestingly, participants sometimes stated that their siblings were especially supportive in navigating the fraught relationship with their mother. For example, one woman in her forties said: “my sister, who’s so sweet, she’s like holding my hand, she was like ‘We’ll get through this, we’re gonna get the answers out of Mom, I will help you’” (P15), while another stated that her sister had “been very protective of me about this, especially with the reaction- or non-reaction of my mother, who- (sighs), that’s been terrible” (P27).

Some participants mentioned that they had shared the news with their friends, some of whom had been very helpful. For example, one stated that “my very close tight group of people were very supportive” (P52) while another said: “I think my support system- who are unqualified and all of the rest of it- has been the thing that’s been the most helpful for me” (P31). Participants reported that friends often listened, accepted and supported, with one stating that “friends always have your side… they are a great sounding board” (P15), while a 41-year-old woman stated:

I have a couple of really, really good ones [friends]. But they have been completely accepting. Um- (laughs) friends seem to be better at accepting you know, things like this than family are. Um… so there- there hasn’t been any issues with that. I mean, I see them less because I’m just not feeling up to going out and socializing. But when I do see them, they have been very supportive, more so than family. (P25)

That said, some participants mentioned having poor experiences with family and friends. A few stated that their spouse downplayed the NPE news and did not understand the gravity of the situation, with one stating that the “lack of support was ultimately…what led to the end of the relationship” (P31), while a 33-year-old woman stated that a “fair number of my friends tried, like it- (sighs) was a very bumpy ride with friend groups” (P14).

Interestingly, participants often mentioned being told (in a manner of words) that “your dad is still your dad” by people in their social circle. Many found this sentiment “invalidating” or “insensitive”, and a way of dismissively downplaying the shock and subsequent impact. For instance, one participant stated: “my experience early on was invalidated by everybody I spoke to. Like everyone…And I’m thinking to myself everything that everyone is telling me goes in direct contrast with the deep feeling, like, I’m feeling in my body” (P52).

On a different note, many participants reported seeking out information and support about the experience of learning NPE news from online sources. This led several participants to online NPE peer support organizations and groups. Some of these organizations provide closed Facebook discussion groups, for example, which they joined in an effort to find support.

Participants who used these online groups often described them as very helpful. One described them as “vital” for their healing, while another stated that “they understand, somebody gets it…and that was life-changing. I mean, life-changing and it was you know, like someone threw a- a life preserver at me as I was- as I was drowning. And um, they helped me not drown” (P44).

Participants noted that these groups offered a unique space where individuals could freely discuss their situation with peers who had gone through the same experience. This led to all sorts of beneficial interactions and positive benefits. For example, one participant stated that “it’s a wonderful thing to be listened to by someone who’s had the same experience” (P11) while another said: “it’s a safe space you can go into and vent and put down your feelings and have them validated by people who have been through the same” (P50).

Others noted that these groups helped them solve problems and issues related to their NPE status. For example, a woman in her sixties stated that: “it’s nice to know that it’s there if I have a problem, there’s somebody there who’s been through it” (P46), while a 30-year-old woman said:

They’ve been extremely helpful. Um, ‘cause you can just kind of read about people’s experiences, and I- I think that, personally helped me just decide on how I wanted to handle things. Um, just reading about other people’s experiences, it helps you weigh your options, I think. Um… (sighs) uh and even just being able to talk about it with people who have gone through it is really important because this group seems very um, supportive. (P48)

That said, a few individuals mentioned some downsides to these groups, mainly that the content could be overwhelming and can be over-consumed. For example, one mentioned that “it does get overwhelming reading it, and there is days when I can’t face it, because it’s just too much” (P25), while another stated that “I find those Facebook groups are really helpful, even though um, sometimes I have to snooze them because it gets like, overwhelming like, with stuff people are posting” (P30). These sentiments are shared by a woman in her twenties:

Even though it’s helpful in the beginning and very informative, I found myself getting very consumed and very um, I guess just triggered by the- the discourse going on, and I was constantly reading stuff every day, for hours on it…So I had to turn off that. (P47)

Theme five: Mental health professionals: many participants consulted these professionals, who were sometimes considered supportive, but some participants noted that they were ill-equipped to help

Mental health professionals include all the professionally accredited workforce in the field of mental health, such as psychologists, psychiatrists, therapists and counsellors. Many participants reached out and utilized one of these professionals after learning about their NPE status, typically for talking-therapy. Most individuals who sought help from mental health professionals reported that this was largely a beneficial experience. For example, one stated that “weekly therapy…has really helped” (P26), and another said that “I’m not saying my therapy wasn’t vital, it absolutely was” (P44).

Participants typically stated that these therapy sessions had a variety of different benefits. First, many participants noted that these sessions offered a venue where they could simply talk about their experience to a trained non-judgemental listener. For example, a 38-year-old man stated: “seeing the therapist every couple of weeks has also been really helpful. Just having someone to talk- talk it through” (P52), while a 30-year-old woman said: “if I feel like I’m overwhelmed or I need to talk to somebody, I will reach back out to my counsellor” (P48).

Second, many participants noted that their therapists often offered empathic validation, rather than some of the glib ‘your dad is still your dad’ responses heard from their social circle. For example, one participant noted that: “my new psychologist, she has validated all of the feelings that I have been feeling. You know, she’s like, ‘you have every right to feel this way’, like- and she’s just, like, very, like, empathetic towards the whole situation” (P35). These sentiments are encapsulated in the quote below from a 30-year-old woman, who noted the benefit of discussing the experience with a professional stranger committed to confidentiality:

It went pretty well, I think it was just helpful because it felt- she’s a stranger so it felt like a safe space to kind of talk about it and get my feelings out and to have them validated, I think she understood that it was a big shock. (P50)

Third, many participants felt that the grief, loss and rupture that they experienced was a form of trauma (as seen in previous sections). As such, some participants explicitly located and utilized a trauma-informed therapist, who were considered extremely helpful. For example, one woman stated: “I thought a trauma-informed coach or a trauma-informed therapist would be really good. And she has been really helpful” (P18), while another said: “I guess I interviewed a couple therapists first…and finding a therapist who actually got it was super helpful” (P28). Others had routine therapists that treated the situation as a trauma, which was also considered very beneficial to healing. For example, a woman in her forties stated that her therapist “really helped me process all of my thoughts, and organize them, um, understand that it was a trauma…she recognized it pretty quickly that I was experiencing a trauma…it- it was really- it was really helpful” (P44). Such experiences with trauma-informed therapists were discussed by several other participants, including a 38-year-old man below:

My therapist is tremendous. She’s really approached it from other different types of loss. And she has looked at- she looks at like, you know, like losses that come from trauma specifically. And looking at it through that lens. So, she’s like really done a lot to, like, to help validate and understand my experience. (P52)

Most participants praised the mental health professionals that they consulted. However, some participants highlighted a number of problems with these professionals. For example, one stated “I seeked out a psychologist, which was awful. She did not know how to help me” (P35), and another “I was in a worse state than I started when I entered that therapy session” (P28).

Some participants mentioned that the therapists (by their own admission) lacked knowledge and experience about the NPE condition, which left the therapist in a state of partial impotence, and sometimes led to inappropriate reactions. For example, one participant said that “I attempted to seek counselling. And I had one meeting with a counsellor who immediately said, ‘I’ve never encountered a situation like this. I don’t know what to do.’ (Laughs) And so- excuse me. That’s not helpful!” (P27), while another said of a Zoom therapy session “I could just picture him with popcorn, he was sitting like this close to the screen. Just fascinated but did not know what to say to me. Like he just listened” (P02).

These kinds of responses from professionals led to frustration and disappointment with the therapeutic encounter, with one participant wryly reflecting on her therapy that “it’s both entertaining and really frustrating at the same time” (P14). This point is further encapsulated in the quote from a 35-year-old man below:

The first sessions didn’t go that well because I- I think the poor therapist had no idea what to do- (laughs) with my situation. Um, the poor guy. But uh, it didn’t go very well, because I- I frankly didn’t know what I needed from him, and I don’t think he knew what to give me. (P34)

One common criticism of mental health professionals was that they appeared not to understand the depths or specificities of an NPE situation, and sometimes even utilized the same dismissive tropes employed by friends. For example, one participant stated that “even this therapist was, like, oh, it has- ‘it doesn’t have anything to do with your identity, you are who you are,’ Um…which I’m like, okay, well…” (P30), while another dropped out of therapy after two sessions, stating that “I did do counselling…and it was horrible…My main takeaway was, she basically said to me, ‘it is what it is, just live with it’…which was kind of like, you know, quite invalidating” (P36). Another participant reported a similar experience, stating:

Well, she didn’t really understand how sensitive, like, this topic was…there’s so much secrets and lies and things that I have to- like, I have on my shoulders right now, and I have to work through this to figure out how I’m going to, you know, deal with this. And she was just kind of, like, “This isn’t a big deal”, like, “This happens all the time.” You know, and I was just, like, “This is a big deal! Like, for a lot of people it’s a big deal!”, you know. So, that’s why we kind of didn’t- it didn’t work very well. (P35)

Interestingly, many participants in the sample expressed their concerns regarding the lack of NPE-specialized professionals, even those who had never used a therapist. For example, a woman in her forties said: “it seems like there’s no therapists who understand or are willing to help out” (P25), while another stated: “I looked into like, a specialized therapist, couldn’t find any” (P18). This lacuna was commented upon by a 65-year-old woman stating that:

I look through you know, what sort of therapy they deal with, and- and what cases, and no one says ‘NPE’. So it’s like, if I could find that one, I would go there, but there isn’t, so um, yeah. It’s- it’s difficult. I would love to find somebody, but um, it’s- it’s hard. (P17)

In sum, some participants found helpful therapists who played a key role in their healing, while others found the process of therapy frustrating and distressing. Almost all agreed there was a lack of training and knowledge in this regard amongst mental health professionals.

Discussion

This study aimed to document the psychosocial experience of adults who have learnt that an assumed parent (overwhelmingly the father) is not a biological parent via a DTC DNA ancestry test. A key finding is that this news typically had a profoundly negative impact on mental health, self-identity and familial relationships, meaning that the study population may be at high risk of developing a psychiatric disorder. Another key finding is that participants commonly sought support and assistance from spouses, siblings and friends, as well as from peer support groups and mental health professionals. These efforts yielded mixed results. Some participants noted that these resources were very helpful, while others noted a lack of understanding about the depth and gravity of the NPE experience, sometimes leading to glib and dismissive responses.

The findings of this study are unique in many ways. To our knowledge, it is the first study to comprehensively document the different psychosocial resources sought by individuals who have learnt NPE news through a DTC DNA ancestry test, as well as the impact of such resources on mental health, well-being and adaptation to the new reality. Furthermore, the large sample size allowed us to document and examine cases that deviated from predominant patterns, meaning we could present important exceptions to general trends. This brought forth highly nuanced perspectives and experiences, which have been insufficiently presented in previous research.

In terms of mental health, some participants stated that the NPE discovery and resultant fall-out led to the onset of discrete psychiatric disorders such as anxiety, depression and panic disorder. This finding overlaps with the results from a quantitative survey of NPE individuals discussed in the introduction, which documented increased depression, anxiety, and panic disorder symptoms in participants after learning NPE news, when compared with matched controls [12]. This implies that learning NPE status is a risk factor for psychiatric disorders and associated symptoms.

Additionally, participants frequently used the language of bereavement to communicate their experience, often describing processes of grief, loss and trauma. The object of the trauma was sometimes the loss of the biological connection with one’s assumed family, sometimes the grief of never knowing biological family members, and sometimes a loss and grief related to the self, given that assumptions about family, genetic and biological identity had been shattered. These findings converge with the two qualitative studies discussed in the introduction, which document shock, grief, loss, trauma and issue of self-identity in response to an NPE discovery [13, 14].

Indeed, a core finding from the present study is the negative impact on self-identity, which was typically described in dramatic terms such as ‘blown-up’, ‘robbed’ or ‘dislocated’, which in turn negatively affected mental health. Guerrini et al. [7] found similar results, with participants learning NPE news reporting more negative consequences for the self than participants who did not learn such news. Participants typically described a distressing and profound experience akin to a biographical disruption [18, 19] including a deep disruption of taken-for-granted assumptions about themselves, and a fundamental and ongoing rethinking of their self-identity. This is somewhat similar to the experience of adoptees, with research indicating that they can also undergo a fundamental rethinking of biography and core identity, a sense of loss and grief, and mental distress upon learning news of their adoption [26, 28, 30].

Another key finding relates to the impact of the news on familial relationships. The results indicate that extant relationships with mothers in particular (but sometimes assumed fathers) were fractured or even completely ruptured upon the discovery of the news. This was because participants felt they had been lied to for so long about such an important aspect of their lives, leading to feelings of betrayal, distrust and anger. These were particularly intense in the early stages, where participants reported facing further denial or even blame from their mother (or assumed father) about the situation. Again, this overlaps with previous research which shows similar negative and long-lasting impacts on family relationships, particularly the mother [13, 14]. Interestingly, Avni et al. [12] measured family relations and mental health after an NPE discovery, finding a positive association between worsened maternal relations and symptoms of depression, anxiety and panic disorder. In sum, all these factors interacted to create considerable existential issues and psychological distress for participants.

According to Bury [18, 19], individuals experiencing a biographical disruption typically scramble to mobilize and utilize resources to address emerging issues. This has been under-researched in the small literature on the NPE population. As such, a key and unique finding from this study is that participants mobilized several different resources to help mitigate the above-described negative impacts and adjust to their new reality, including (i) family-members and friends, particularly spouses and siblings; (ii) online peer support; and (iii) mental health professionals, including therapists and counsellors. These forms of support were often described as helpful. That said, many highlighted that these individuals did not always understand the depth and nature of their distress, sometimes acting in a dismissive or inappropriate manner. Even online peer support could be experienced as overwhelming. This implies a necessity for psychoeducation, training, and support for helpers in this space, including mental health professionals, peer support workers and family members.

Indeed, the results indicate a gap in service provision for this population, meaning a need for the creation of tailored interventions and specialist resources that can be used by mental health professionals to help mitigate their distress and foster their recovery and healing. Such resources should specifically address some of the negative psychosocial variables commonly experienced by participants in the present study. For example, participants regularly talked about grief, loss, trauma and troubling shifts in identity. As such the creation of new resources could draw on grief and loss theory, trauma therapy strategies and identity theory as foundational concepts that may be helpful for individuals negatively affected by NPE news. In the meantime, clinicians can consider integrating aspects of grief and loss therapy, as well as therapeutic strategies to address and heal trauma, when treating clients or patients in a NPE situation. Such approaches could also be used as a foundation for the creation and dissemination of evidence-informed and accessible self-care resources that affected NPE individuals can use in their healing journey.

Despite the largely negative experience reported by participants, there were important exceptions to the general trends, with some participants reporting positive gains associated with their newfound NPE status, including (i) relief that they were not biologically related to their assumed family; (ii) new and rewarding relationships with new biological relations; and (iii) pleasurably embracing their new ethnic heritage and new self-identity. In other words, the NPE population do not have a universally negative experience, meaning clinicians and peer support workers should always take an idiographic approach, and not make assumptions when working with this population, as they are not a homogenous group with homogenous experiences.

There are several limitations to this study. First, mental health was a key theme that was explored qualitatively, however this was not formally measured through the use of validated scales. Further quantitative research is necessary to give estimations of rates and risk of psychiatric disorder in this population. Second, we engaged in an overarching analysis to find common themes across all participants, as well as searching for instances that deviated from emerging themes. This is a recommended strategy when there is a dearth of research on a population. However we did not engage in any form of stratified analysis by factors such as age, sex, ethnicity, religion or conception story, which may have revealed nuanced differences between sub-groups. For example, experiences and perceptions may differ according to variables such as ethno-racial status or religious affiliation, particularly as meanings and identities surrounding parentage outside of marriage can vary according to such factors. This should be an area for future research. Third, we recruited from several sources to try and overcome any sampling bias. This included the NPE Friends Fellowship, an online peer support community devoted to this population, as well as clinics serving this population. This may have distorted the results, inasmuch as only those with a distressing experience would likely join such a group or attend a clinic, hence the many reports of mental health and identity issues. Moreover, this may have particularly affected theme four, where we reported that participants frequently mentioned seeking help from online NPE peer support groups- a logical finding given that we recruited from such groups. That said, many other means of recruitment were put into place, including raising awareness about the study in diverse parts of the Canadian media, and over half of the participants were not involved in any clinics or groups.

Conclusions

This study indicates that learning about NPE news from a DTC DNA ancestry test can be an extremely distressing experience, with negative impacts on mental health, self-identity and familial relationships (with some exceptions). This suggests that this study population may be at high risk of developing a psychiatric disorder. However affected individuals do not passively accept the news, but commonly seek help from a variety of resources including family (mainly spouses and siblings), online peer support groups and mental health professionals. These resources were reported to be helpful, but participants regularly noted that clinicians and therapists seemed ill-equipped to help. This indicates the need for (i) the production and dissemination of evidence-based and accessible self-care resources that individuals can use in their healing journey; (ii) the creation of tailored interventions and specialist resources that can be used by mental health professionals to help mitigate distress and foster recovery; and (iii) the provision of appropriate support (and even training) for individuals who support the NPE population, including spouses, siblings and peer supporters. As stated, the creation of such resources and supports can be informed by existing theories, therapies and practices related to supporting individuals experiencing grief, loss, trauma and identity disruption. In conclusion, this study reveals an expanding, vulnerable and under-researched population facing specific mental health stressors, in need of new services and supports.

Electronic supplementary material

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Abbreviations

DNA

Deoxyribonucleic acid

DTC

Direct-to-Consumer

NPE

Not Parent Expected

Author contributions

JC, along with RW, implemented the study and collected the data; JC played a lead role in data analysis, and wrote the first draft of the manuscript. MHDL and RD provided feedback and suggestions throughout the unfolding of the project, including editing drafts of the manuscript. RW conceptualized and designed the study, directing data collection, analysis and interpretation, and providing critical revisions to the manuscript. All authors read and approved the final manuscript.

Funding

This study was funded by the Social Sciences and Humanities Research Council of Canada, Genome Canada and Genome Quebec. The funders had no role in study design, data collection, analysis nor interpretation.

Data availability

Anonymized excerpts of the transcripts relevant to the study are presented within the paper. Full transcripts cannot be shared publicly because they include massive quantities of identifying and highly-personal information. The Research Ethics Board (REB) approval was given contingent upon the promise that data would only be shared among the actual research team, consistent with Canadian and Quebec law.

Declarations

Ethics approval and consent to participate

The protocol was reviewed and approved by the Research Ethics Board of the CIUSSS de l’Ouest-de-l’Île-de-Montréal (protocol number: 2022 − 348, IUSMD-21-49). All participants were adults and gave written informed consent prior to participating.

Consent for publication

Not applicable.

Authors information (optional)

Not applicable.

Competing interests

Rebekah Drumsta has been part of the leadership team of NPE Friends Fellowship since the beginning (2018) and at one point was briefly the interim CEO. She does not and never has received any renumeration for these roles.