Ethical Considerations in Adoption Research: Navigating Confidentiality and Privacy Across the Adoption Kinship Network

Abstract

Adoption research often includes multiple members of the adoption network, each of whom has distinctive perspectives. Participants may include adopted individuals and their siblings as well as adoptive parents, birth parents, and adoption professionals. Due to these multiple informants and the sensitivity of the topics explored in adoption research, researchers encounter several unique ethical concerns when working with populations impacted by adoption. The current paper addresses confidentiality and privacy issues that arise when conducting adoption research. Examples from a longitudinal study on openness in adoption are provided to highlight strategies that can be used to address these issues.

The past several decades have seen a shift in attention in adoption research. While much of the early research was concerned with differences between adopted and nonadopted individuals and the effects of early adversity (e.g. Juffer & van IJzendoorn, 2005; Kumsta et al., 2015), there is currently a growing focus on the individual experiences and circumstances that shape the adjustment of persons affected by adoption over time (Palacios & Brodzinsky, 2010). Examples of topics in line with this focus include communication in the adoptive family or the effects of differing openness arrangements in adoption (e.g. Brodzinsky, 2006; Grotevant, McRoy, Wrobel, & Ayers-Lopez, 2013). It is important to examine not just the experiences and perspectives of the adopted person, but also the experiences and perspectives of other members of the adoption network and the interactions among them.

Research with families in general can prove to be complex, in part because the researchers must navigate communication with multiple individuals who share the same history, and they may need to make research decisions that affect both the specific family member and the family as a whole. Thus, there are particular ethical concerns that arise when conducting family research, such as individual family members’ having differing levels of privacy concerns and willingness to participate (see Margolin et al., 2005 for review). Research with adoptive families introduces a number of additional concerns, particularly related to privacy and confidentiality, due to the manner in which these families are formed. For example, the adoption of a child commonly involves not just the integration of a new child into the family system, but sometimes the integration of a birth family. Thus, researchers working with such families must demonstrate care in navigating information between multiple family members who may each have their own privacy concerns and stipulations. In addition, adoptive family members and birth parents may vary in their willingness to share their connection with adoption with the outside world. This introduces the need for researchers to exercise care when contacting members of the adoption network to consider participating in a research project. Adoption researchers must make certain precautions that take all of these factors into account; however, no review of privacy and confidentiality issues specific to research with adoption populations currently exists. In addition, there are currently no guidelines in the adoption literature that address these issues. Even current texts on ethical conduct of research (e.g., Cooper, 2016) focus much more on issues such as data management, data integrity, research misconduct, and authorship credit, than on concern for protection of participants’ privacy and confidentiality.

The present article reviews privacy and confidentiality concerns that arise specifically when conducting research within adoption networks. Although the examples given in this report are based on a study of domestic private adoptions, they suggest principles that could be adapted for studies of international adoption or adoption through the public child welfare system. For the purposes of this article, the adoption network encompasses members of the adoptive family, members of the birth family, and adoption professionals (e.g. agency staff) involved with the families. We will address privacy and confidentiality concerns during three stages of the research process: recruitment of participants, data collection, and publication of findings. Following each section, we will also highlight a number of methods to address these concerns, providing examples of procedures and practices used in the Minnesota/Texas Adoption Research Project (MTARP; Grotevant et al., 2013). Whereas some issues and strategies discussed in the current study may generalize to all types of adoption, adoption practices vary widely and each form of adoption presents its own unique ethical challenges. Limitations of using MTARP, a single study with a specific adoption sample, as the frame of the discussion are discussed. Nonetheless, we believe that this analysis can provide a foundation for future research that may examine ethical concerns unique to other types of adoption.

The Minnesota/Texas Adoption Research Project

The Minnesota/Texas Adoption Research Project (MTARP; Grotevant et al., 2013), an observational longitudinal study of the effects of openness in adoption, will be utilized as a case study to elucidate the privacy and confidentiality issues present when conducting research with adoption populations as well as to illustrate ways to address these issues. As an observational study, the purpose of MTARP was to learn of the experiences of adoptive families with varying levels of birth family contact. MTARP involves investigators from multiple disciplines, including social work, psychology, sociology, and education. Members of each discipline contribute unique perspectives on adoption research, and the disciplines all share a number of ethical principles and guidelines. Participants in MTARP have included adopted children, adoptive parents, and the birth mothers of some of the adopted children, as well as staff at adoption agencies who have been involved in these placements. All children in the sample were domestically adopted during infancy, by same-race parents. Data included self-report measures completed by family members, individual interviews with family members and agency personnel, a couples interview with adoptive parents, an observational family interaction measure, school records for the adopted individuals, and interviews with agency staff about their adoption practices. Data were collected during visits to the homes of the participants and by phone during the earlier waves of the study and through internet technology in the later waves of the study. Interviews with agency staff were conducted in person or by telephone.

MTARP began in the 1980s, a time when closed adoptions were the norm. During this time period, there was still a prevailing culture in the United States that adoptive families and biological families should be indistinguishable, and policies leading up to this time period (e.g., matching children with adoptive parents so that they might physically resemble each other) reflected this ideal (Kirk & McDaniel, 1984; McRoy, Grotevant, & White, 1988). In fact, there is still no national legislation in the United States allowing adopted individuals access to their own birth records without court permission, although many states (e.g. Alabama, Alaska, and Connecticut) have changed their laws to allow adult adopted persons access, while others are considering changes (Child Welfare Information Gateway, 2016). Thus, many MTARP practices reflected the extreme care needed to account for this absence of contact between birth mothers and adoptive families and the secrecy that was expected to be maintained.

Over the past several decades, adoption agencies have moved towards offering more openness options to adoptive and birth families (Grotevant & McRoy, 1998; Henney et al., 1998; Henney et al., 2003). While confidential adoptions were once the norm, more recent surveys suggest that approximately two-thirds of families formed through private domestic adoptions have some level of contact with birth family member(s), and this number is expected to rise (Vandivere, Malm, & Radel, 2009). However, that is not to say that such safeguards in research procedures are no longer necessary, as concerns regarding confidentiality within the adoptive family remain, and certain agencies still offer closed adoptions to birth mothers. Therefore, the principles abided by MTARP researchers remain relevant today.

Phase 1: Recruitment of Adoption Samples

Recruitment and the Sensitive Nature of Adoption

Recruitment of adoption populations for research purposes requires special care due to the sensitive nature of adoption. While adoption may take on many forms in addition to the domestic adoption of infants, such as adoption from foster care, transracial adoption, international adoption, and adoption by same-sex couples, families formed through adoption all share a number of characteristics that require attention during recruitment. For example, among all types of adoption, there is the concern that adoptive families could be uncomfortable being approached to participate in a study by unfamiliar researchers who know of their status as an adoptive family. Such concern may be due to a number of reasons. To begin, there has historically been a certain degree of stigma surrounding adoption and members of the adoptive family, particularly regarding societal views on infertility and the absence of a biological link between parent and child (Freeark et al., 2005; Miall, 1987; Wegar, 2000). While societal views on adoption have become less negative in recent years, individuals involved in adoption continue to experience stigma, both through personal experiences as well as through the media (Fisher, 2003; Baden, 2016). In recent years, adoption stigma has only become more complex, as types of adoption have become more diverse. For example, families formed through adoption by same-sex couples commonly experience stigma related to their status as a sexual minority-parent family (Farr, Crain, Oakley, Cashen, & Garber, 2016).

Another source of concern stems from how adoptive parents may vary in the degree to which they choose to acknowledge the fact that the adopted child is not biologically related to them (Kirk, 1984). Kirk describes how adoptive parents may fear that others would see their family as less valid than families not formed through adoption, a reflection of the bionormative biases of society. Adoptive parents may cope with this fear by refusing to acknowledge such differences and may react negatively to researchers who wish to bring the adoption to the forefront of the discussion. In addition, there is the prevailing concern, particularly among agencies that handle within-race domestic adoptions, that the adopted child was not told by the adoptive parents about being adopted. Although this practice is becoming much less common, it is important that researchers acknowledge this as a possibility, as each adoptive family is unique in how they communicate the adoption to the child.

Similar issues arise when recruiting members of the child’s birth family, specifically his or her birth mother. Like adoptive parents, birth mothers have historically experienced stigmatization due to societal views on single motherhood and having children out of wedlock (Wegar, 1997; Wiley & Baden, 2005). Thus, a primary concern when contacting them is the possibility that other members of the birth mother’s household may not be aware that she placed a child for adoption. For example, in a study of birth mothers and the oldest child they were currently parenting, researchers found that approximately one-third of the children were not aware that they had a sibling who had been placed for adoption (Henney, Ayers-Lopez, Mack, McRoy, & Grotevant, 2007). Secrecy about the adoption may also pertain to the birth mother’s romantic partner. Birth mothers are often no longer in relationships with the birth father following the birth of the child or the adoption (Clutter, 2014; Henney, French, Ayers-Lopez, McRoy, & Grotevant, 2011). In fact, some birth fathers may not be aware of the child’s birth (if the couple parted ways soon after conception), and many others who are aware may have no involvement in the adoption itself (Brodzinsky & Smith, 2014). Such findings emphasize the possibility that the birth mother may have a new partner whom she has not informed about the adoption, and research procedures should be constructed in such a way that such decisions are not compromised.

Recruitment of Adoption Samples: Perspectives from MTARP

Recruitment of participants in the Minnesota/Texas Adoption Research Project took place in the mid-1980s. Stigma towards both adoptive families and birth parents was more pronounced during this time period, than is currently the case. Thus, researchers and agencies that participated in the recruitment for the project took extreme measures to ensure the potential participants’ confidentiality and privacy. While adoption-related stigma may no longer be as noticeable and practices such as keeping information about adoption private from family members may be less common currently than they were during MTARP’s sample recruitment phase, researchers should not assume that these issues are no longer present. In addition, general awareness of patient and participant privacy issues has increased dramatically since that time period (for example, the passing of the Health Insurance Portability and Accountability Act (HIPAA) in 1996). Therefore, in order to minimize harm in accordance with General Principle A: Beneficence and Nonmaleficence of the American Psychological Association Ethics code (APA, 2010) and uphold standards that are consistent with the current expectations on privacy, researchers should not assume that adoption-specific measures of handling privacy and confidentiality are no longer necessary or even less essential than in the past. Instead, researchers should continue to act under the assumption that adoption-related stigma still exists in society and that there may be consequences associated with the participant’s history with adoption being revealed without their consent.

The recruitment of adoption populations often requires an interdisciplinary approach due to the difficulties of accessing these populations. When recruiting adoptive and birth families, researchers may consider seeking the aid of agencies that handled the adoptions and have information about the individuals involved, as opposed to attempting to contact these families directly. Long-term cooperation with agencies may be necessary, as agencies have an ethical obligation not to release adoption records to outside parties (such as the researchers) without the person’s consent. In order to maintain the privacy of families and birth mothers involved in domestic adoption, researchers at MTARP were assisted by agency staff members who mediated initial contact between the researchers and the parties of interest (birthmothers and adoptive families). Not only were these staff members invaluable in initially contacting the participants, they also played an essential role in the initial sample selection, as they could view the files of adoptive families and identify which families matched the inclusion criteria for the study. Thus, it is beneficial for researchers interested in working with adoption populations to be knowledgeable about the agency’s roles in the adoption and be flexible with working with agency staff members.

Following completion of necessary Institutional Review Board reviews, researchers in MTARP reached out to adoption agencies across the country to ask for assistance in recruitment. One staff person at each participating agency was named as a liaison to the research project. Before beginning recruitment, all agency liaisons were trained in-person by the study’s Principal Investigators. This training protocol was shaped both by the investigative team and by the agency staff, who provided invaluable perspectives. During these training sessions, researchers clarified and underscored with the liaisons the procedures that would ensure the confidentiality and privacy of the participants. In most cases, all research activities undertaken at an agency funneled through this one person, to enhance clarity of communication.

When agency staff members first contacted potential participants, certain guidelines were followed in order to protect the privacy of the individuals. Staff members from the agencies were responsible for obtaining initial consent from all of the participants and scheduling the first data collection interview session. Thus, researchers at MTARP were never in contact with the individual unless the participant had agreed to release contact information to the researchers. In fact, participants’ names and contact information were not made known to the research team until the participants personally sent forms to the researchers with this information.

Additional precautions were taken when agency staff members initially contacted birth mothers. Due to the fact that other members of the household may not have been aware of the birth mother’s placing a child for adoption, agency staff members were instructed to only contact birth mothers by phone and to not leave any messages on the birth mothers’ home answering machines. Thus, it was unlikely that staff members would unintentionally reveal this information to other members of the birth mother’s family. Lastly, an adoptive family who agreed to participate in the study was not told whether the child’s birth mother was also involved and a birth mother was similarly not informed of the adoptive family’s participation. Efforts were made so that the same researchers did not have contact with both the adoptive family and the birth mother, and the researchers themselves were unaware of the involvement of the participants’ counterpart (e.g. birthmother, etc.) in the study. This process guaranteed that this information remained protected throughout the research process.

Longitudinal research with adoptive populations may require additional privacy procedures. For example, privacy concerns remain important when maintaining contact with participants over time. In order to maintain contact with participants between data collection waves, researchers in MTARP distributed newsletters and progress reports that gave updates of general study findings. Researchers also periodically asked participants for updated contact information. To account for the potential privacy concerns of birth mothers, MTARP researchers first asked birth mothers for their permission before sending information to approved mailing addresses. In addition, the outside of the mailing envelopes made no mention of words that could possibly disclose the birth mother’s participation in an adoption study, such as “adoption” or “birth mother”.

Privacy concerns should also be considered during re-contact in longitudinal studies. During follow-up waves of MTARP, agencies were no longer involved in the recruitment process. However, researchers made sure to follow similar guidelines, particularly when re-contacting birth mothers. When re-contacting birth mothers, any messages left on answering machines made no mention that the study was concerned with adoption. Similar strategies were used when leaving phone messages with other members of the household. Furthermore, during the first wave of the study, birth mothers were given the option of documenting specific contact instructions that would protect the birth mother’s confidentiality. Researchers took these instructions into account before contacting her for subsequent waves of the study.

Phase 2: Data Collection

Data collection can present unique challenges when it involves a number of informants who relay their opinions and views on a shared experience. As participants may not want other members of the adoption network to be aware of their personal views on at times sensitive topics, adoption researchers must be able to navigate communication across the participants while upholding a strict standard of confidentiality.

Navigating the Adoptive Family

Although maintaining confidentiality between parents and children in family research is challenging in itself, there are specific concerns that arise when working with adoptive families. To begin, parents may differ in the level of communicative openness and type of communication they have with the child about adoption (Neil, 2009; Wrobel, Kohler, Grotevant, & McRoy, 1998). Adoptive parents, particularly those who do not communicate openly with the child about the adoption, may tell researchers information that they do not wish the adopted child to know. The amount and type of information disclosed may depend on the openness of the adoption arrangement. In confidential adoptions in which no identifying information is exchanged, adoptive parents may lack first-hand knowledge of birth relatives and consequently have little or nothing to communicate with the adopted child, even if they wished to do so. In contrast, adoptive parents with indirect or direct contact with the birth family typically have more updated information, and some may wish to withhold such information from the child, at that point in time. Regardless, all adoptive parents may reveal information to the research team that they have not shared with their child, such as the adoptive parent’s feelings about the adoption process and circumstances that led to the adoption. Thus, confidentiality between parents and children remain important in all types of openness arrangements.

In MTARP, some adoptive parents, who were having contact with the birth mother mediated by the agency, chose not to share those letters and pictures with their child, typically until they were older (Grotevant & McRoy, 1997; Wrobel, Kohler, Grotevant, & McRoy, 1998). Some of these children were not aware that they were being excluded from such contact (Grotevant & McRoy, 1997). This was primarily the case for adoptive families with young children whose cognitive understandings of adoption were limited. In fact, research suggests that adopted children may not fully understand the concept of adoption until middle-childhood and adolescence. Thus, the amount of information that an adoptive parent chooses to share with his or her child may depend on the child’s age and developmental level as well as the parent’s own readiness to have these conversations (Brodzinsky, 2011; Brodzinsky, Singer, & Braff, 1984; Wrobel, Kohler, Grotevant, & McRoy, 2003). For these reasons, protecting the confidentiality of the information shared with the research team by each parent not only respects the parent’s choices, but may also ensure that the child is not given information that the parents feel they are not yet ready to disclose.

Similarly, adopted children may give researchers information that they do not wish their adoptive parents to know, particularly information regarding their thoughts, wishes, or fantasies about their birth parents. This is particularly relevant in instances in which the adopted child considers his or her adoptive parent(s) to be a barrier to seeking out more information about the birth parents. Reports from adopted adults reveal that some adoptees may be hesitant to actively seek out more information because they do not wish to hurt their adoptive parent (Garber, French, & Grotevant, 2015; Wrobel, Grotevant, Samek, & Von Korff, 2013). Adoptive parents may also not want their child to obtain such information. In addition, the confidentiality of the adopted individual is particularly important in the age of social media, as adopted children can potentially obtain information and contact birth family members without the knowledge of the adoptive parents. Also, due to the nature of contemporary social media, adopted children may rather easily and quickly encounter multiple members of their birth family, not just the birth parents (Greenhow, Hackett, Jones, & Meins, 2015). Taken together, there is the possibility that adopted children will have conversations with the birth family that they may not wish to disclose to their adoptive parents.

Concerns for Birth Families

Perhaps the most unique confidentiality concern when conducting research with adoption populations involves the coordination of information from adoptive and birth family members. Adoptive parents and birth parents may have varying levels of contact that range from complete disclosure to complete confidentiality (Grotevant et al., 2013). Although adoption agencies have continued to be more supportive of openness arrangements and opportunities over time (Henney, Onken, McRoy, & Grotevant, 1998; Henney, McRoy, Ayers-Lopez, & Grotevant, 2003), researchers should not work under the assumption that experiences relayed to the researcher by any one person is known to others.

Information relayed to researchers by birth parents and adoptive families has the potential to harm the relationship between the two parties, if such information is disclosed to the opposite party. For example, some birth mothers may not have any intention of searching and being reunited with the children who were placed for adoption (Ayers-Lopez, Henney, McRoy, Hanna, & Grotevant, 2008). Such information may prove to be hurtful to an adopted child who wishes to contact and learn more about their birth mother. Similarly, adopted children may vary on whether or not they wish to have more (or any contact) with their birth family (Grotevant et al., 2008; Mendenhall, Berge, Wrobel, Grotevant, & McRoy, 2004). A study of adopted adolescents in MTARP revealed that a small number of adolescents wished to cease contact with the birth mother at that time (Berge, Mendenhall, Wrobel, Grotevant, & McRoy, 2006). It should be noted that, although attitudes on issues such as searching or willingness to reunite may be accurate at the time they are stated, the views of adopted individuals, adoptive parents, and birth parents about these issues may change over time. Many studies involving these topics, like those performed as part of MTARP, represent only “snapshots” of these attitudes at specific data collection time points. Thus, disclosure of an individual’s attitudes at these specific time points may not only cause unnecessary harm, but may also interfere with future reunification efforts if the individual’s attitude changes.

Researchers conducting observational studies with both adoptive families and birth parents may encounter situations in which they believe that sharing information between parties could benefit all members of the adoption network and may feel tempted to intervene. For example, a small number of birth mothers and adoptive mothers in MTARP had disagreed on the reasons contact between the two parties had stopped, with the adoptive mother and the birth mother both blaming each other for the loss of contact (Dunbar et al, 2006). Such situations could also manifest as the participants themselves requesting information about their counterpart. For example, some children in MTARP expressed strong desires to learn more about their birth families (Berge et al., 2006). Adoptive family members may be more inclined than others to seek these kinds of assistance, given the potential vulnerability of these individuals. Nevertheless, it is important that the research team understand its role as researchers as opposed to a helping professional, and that safeguards be put in place to prevent such sharing from happening.

Similar concerns may arise when information relayed by birth families has important implications for the adopted child. A researcher may be placed in an ethical dilemma if, for instance the researcher uncovers important health information, such as genetic predispositions for certain disorders, that is not known to the adoptive family. The lack of such family health history information is increasingly being considered as a health disparity issue for adopted persons (May et al., 2016). This is particularly relevant in cases in which there is no contact between the birth parent and the adoptive family. Communication with the adoption agency may be especially important in these situations, as the agency may act as a mediator between the two parties and inform the adoptive family on the behalf of the birth mother. While it may not be ethical for researchers to directly relay such information to the agencies, researchers, in the context of their interview process, can explain that, while they are not permitted to relay this information to the adoptive family, the birth mother might wish to relay the information herself to the agency and ask that the agency convey the information or place it in the adopted child’s file.

Collection of Data: Perspectives from MTARP

Due to the previously reviewed concerns regarding handling adoption related information, it is best for confidentiality guidelines to be communicated with the participants as early and clearly as possible. Confidentiality procedures in MTARP began with a comprehensive consent procedure that involved the administration of multiple copies of the consent forms. Consent forms provided to the adoptive families stressed that any information relayed to researchers would not be shared with other members of the adoptive or birth family. For example, at Wave 2 of the study, consent forms for adopted adolescents stated that any information relayed by them would not be told to the adoptive parents or other family members, and this information was presented orally and in writing. Consent forms also clarified that the role of the interviewers was solely to gather research data from the participants. The forms specifically stated that interviewers would not be in the position to provide any sort of counseling or therapy. Thus, interviewers would not disclose any information between family members, even in situations in which one party wished for more information about the other, nor would they give participants advice even if it was requested of them. Instead, all participants were provided with general adoption-related resources they might find useful, and researchers often referred participants back to their placing agencies when the need arose. This general approach was appropriate, as the study sample was low risk relative to other adoption samples. Lastly, as per Ethical Standard 4.02 of the APA Ethics Code (APA, 2010), these consent forms also outlined any limitations to such confidentiality, such as in the case of suspected or reported child abuse, neglect, and other potentially life-threatening situations. Consent forms and recruitment letters given to birth mothers were similar in their assurances of confidentiality in that they stressed that recordings and written records would be de-identified and all identifying information would be securely stored.

Regarding the collection of the adopted adolescent’s school records, adoptive parents and the adopted adolescents were asked to sign an authorization form that was then sent to the school. This form did not disclose the adoptive status of the child or his/her family and instead stated that information was requested for a research project, in which their family was participating. In addition, there was no mention of adoption or related words on this form. This procedure was enacted to address instances in which a family or child may not wish for their adoptive status to be revealed to the school. Although no other outside parties were contacted for information on participants, similar procedures could be used when communicating with any external party in order to ensure privacy of the participants.

While it is essential to communicate the confidentiality expectations to the participants, it is also important that such expectations are properly relayed to the researchers. As MTARP was an observational study of openness arrangements, researchers were reminded that their role was to listen and to learn from the participants, not to intervene in their lives any more than the act of participating in research would entail. Even if a researcher personally believed that a certain communication or openness arrangement was detrimental to the adjustment of the family or if the participant asked the researcher for the interviewer’s opinion on a matter, they were not to interfere or make any sort of evaluative statement. Thus, it was important that researchers had a clear understanding of their duties as observers and not interventionists when handling and collecting data, in addition to a full understanding of the importance of maintaining participant confidentiality. During data collection phases, these broad issues were regularly discussed in research team meetings. In order to uphold high standards of confidentiality, all research staff in MTARP were required to read and sign a “Confidentiality Statement” that reiterated the staff member’s obligation in maintaining confidentiality of the collected data. Researchers involved in data collection were encouraged to discuss any questions or concerns they had with the study’s Principal Investigators. Although this statement has been slightly modified over the years, all research assistants are required to sign this statement annually to this day. Research staff also receive copies of the consent forms sent to the participants. This allows the researchers to be knowledgeable of the assurances that were given to the participants regarding confidentiality of information. The research protocol also undergoes annual review by the relevant university Institutional Review Boards.

Similar to all types of family research, there are certain data collection procedures that researchers interested in working with adoptive families should follow in order to minimize the possibility of breaches in confidentiality. Such procedures include locating private places in the home for individual interviews and properly de-identifying all data collection records, measures, and interview transcripts. However, collecting data from adoptive populations may require additional precautions that are not necessarily needed for other types of family research, due to the potential added level of secrecy. For example, to prevent accidental breach of confidentiality between adoptive and birth families, MTARP utilized separate interviewers for the adoptive family and the corresponding birth parent. To help with preventing accidental disclosures within the adoptive family, interviewers in MTARP completed child information sheets with the parents prior to interviewing the child. The sheet included questions regarding the amount of information the child knew about the adoption and the birth parents, how the child referred to his or her birth relatives, and how the adoption was communicated to the child. Not only was this sheet useful in that it gave the researcher more familiarity with the child’s understanding of adoption, it also allowed researchers to note what sorts of information were withheld from the child, if any. This reduced the likelihood that information unknown to the child would be unintentionally mentioned during the child interview.

There may also be privacy concerns involving the questions that researchers wish to ask the participants. This may especially be the case for adoptive parents who choose not to disclose much information regarding the adoption to their child. These parents may be uncomfortable with researchers asking their child questions that the parents believe are disruptive to the adoptive family’s communication style. Thus, it may be at times beneficial to give adoptive parents some level of control over the questions that are asked to the adopted child. In MTARP, researchers allowed adoptive parents the opportunity to look over the questions in the adopted child interview before the child interview took place. This was done for all instances in which the adopted child was below 18 years of age. Parents were given the option of modifying or deleting items if they found them unsuitable, although this was rarely ever the case. Occasionally, parents provided information that assisted the interviewers, by noting certain language in the interview that the child would likely not understand and providing language used in their family.

Phase 3: Publication and Data Dissemination

A special concern involving confidentiality in adoption research involves the communication of information to not just the general public but also to adoption agencies and policy makers. Research on adoption commonly has the goal of informing real-life adoption practices that better address the needs of all parties involved. Thus, researchers working with adoption populations face the challenge of disseminating the full range of opinions and experiences of the participants without compromising confidentiality. For example, some adopted adolescents in MTARP blamed the adoption agencies for difficulties in increasing contact with the birth parent (Berge et al., 2006). Specifically, the adolescents believed that agency staff did not send letters that the adolescents had written to their birth parents. In addition, many birth mothers expressed grief associated with the adoption placement and the level of openness in the adoption (Christian, McRoy, Grotevant, & Bryant, 2008; Henney, Ayers-Lopez, McRoy, & Grotevant, 2007). It is important that the agencies be made aware that a number of birth mothers were dealing with post-placement grief, without identifying specific participants, in order to inform the development of openness practices that can better serve these birth mothers.

In order to capture research findings involving family processes, communication in the adoption network, and the feelings of the members of the adoption network, many adoption researchers rely on qualitative and mixed-method approaches. Through these approaches, researchers can explore the individual experiences of those affected by adoption. Researchers working with adoption populations may wish to incorporate quotes and personal adoption narratives into manuscripts and reports in order to more richly convey these experiences to agency staff and policy makers. Additionally, these experiences must be conveyed in a way that reduces the chance of agency staff recognizing the participants. For these reasons, adoption researchers may need to take certain precautions to ensure that confidentiality and anonymity is not compromised during data publication and dissemination.

No two adoption experiences are the same. There are a variety of situations that lead to adoption, a variety of ways in which adoption is navigated within the adoption network, and a variety of ways in which individuals affected by adoption understand and process the adoption. Thus, when researchers recount individual experiences within a publication, they run the risk of disclosing information that could compromise the identity of the participant. In addition, when working with adoption-related populations, participants may commonly speak about other members of the adoption network. For example, children and parents may give their perceptions of the adoptive child’s birth mother. Such information may be central to studies of adoption, especially if these studies are concerned with communication and contact between birth families and adoptive families. Thus, adoption researchers must be conscientious of not only taking precautions to disguise the identity of the participant, but also the identities of other individuals mentioned in interviews.

Publication and Data Dissemination: Perspectives from MTARP

An individual’s experience with adoption may be so unique that merely disguising the name of the participant or individuals named by the participant may not be enough to ensure that the individuals are unidentifiable. Thus, it is important for adoption researchers to move beyond merely using pseudonyms when employing qualitative techniques with adoption populations. For example, researchers using such methods may wish to be wary of reporting unnecessary personal information, such as demographic characteristics, that may make the participant identifiable (Morse, 2008; Morse & Coulehan, 2015). Researchers in MTARP took such an approach by disguising the characteristics of the participants and individuals they spoke about in published reports, such as by changing the age of the participant and omitting other potentially identifying information such as names of cities, schools, shops, and so on. Researchers also avoided potential risky disclosure situations by using composite cases from multiple participants or by excluding particularly identifiable cases altogether. These precautions were conveyed to participants through the initial consent form, which stated that individual participants would not be identifiable in any publications or reports.

Future Ethical Issues to be Considered

The current paper addressed multiple ethical concerns involved in adoption research, particularly in regards to the privacy and confidentiality of members of the adoption network. However, it is not possible to address all potential issues that may arise when working with these populations. Procedures and findings in the current paper were restricted to the context of the Minnesota/Texas Adoption Research Project, which consisted of a relatively low-risk sample of within-race domestic adoptive families and birth families. Additional ethical considerations arise when working with domestic adoptive families that involve kinship adoptions, as familial connections between birth families and adoptive families possibly influence cross-network contact and communication. In addition, confidentiality and privacy policies become more complex when working with incarcerated or potentially dangerous birth parents due to the potential risk to the safety of the participants and the possible legal barriers. Lastly, ethical safeguards will continue to be important as more members of the adoptive kinship network, such as birth fathers, birth grandparents, birth and adopted siblings, foster parents, and others are included in research designs.

Although many privacy and confidentiality risks are common among all forms of adoption, different forms of adoption such as transracial adoption, international adoption, adoption from care, and adoption by sexual minority couples may each have their own specific issues that must be accounted for in the research. For example, there is an additional level of stigma faced by adoptive families with sexual minority parents that may require additional precautions. Regarding international adoptions, new privacy concerns may arise from working with birth mothers who reside in different countries and who typically do not have any contact with the adoptive families. Lastly, recruitment strategies when working with private domestic adoption agencies may not generalize to international adoption agencies and child welfare systems.

New ethical concerns will surely arise as the process of adoption and the composition of adoptive families continue to change. For example, the advancement of reproductive technologies will introduce further complexity to the network of individuals involved in a single adoption. Future adoptive family networks may involve not just a singular birth family but surrogate mothers, sperm donors, and egg donors, all potentially from different families. Another example involves changes in the forms of contact that have arisen over the past several decades. For instance, changes in forms of birth family contact have been conjoined with the larger trend of increasing social media visibility. Online communication through social media has become increasingly accessible and commonplace, increasing the possibility and ease of birth family contact. Adopted parents may find themselves having less and less control over the adopted child’s communication with the birth family, introducing the possibility that the child may be contacting their birth family (or the birth family contacting the child) without the adoptive parents’ knowledge (Fursland, 2009). As there may be dangers to unsupervised online contact (Fursland, 2010), researchers may find themselves in a position in which they may have to choose between maintaining confidentiality and disclosing for the sake of the adopted child’s safety.

As the face of adoption was different thirty years ago from what it is today, we can be confident that adoption will look differently thirty years from now. Thus, it is the duty of researchers working with populations connected to adoption to be knowledgeable of changing practices in adoption and constantly strive to adhere to the highest of ethical standards when planning and conducting their research.