Abstract
Objective:
Fetal tissue research has driven significant medical advances but remains publicly contentious in the United States. The views of pregnant individuals in the U.S. regarding the donation of fetal tissue offer an important and previously unexplored perspective on this issue.
Methods:
We conducted a secondary analysis of data from two separate broader qualitative studies. Pregnant and recently pregnant individuals (n=79) from clinical sites at the University of North Carolina at Chapel Hill, Johns Hopkins University, and Massachusetts General Hospital were interviewed individually using a semi-structured guide addressing a range of issues related to infectious disease research and pregnancy, including the acceptability of fetal tissue research. Interviews were transcribed, coded, and analyzed for emergent themes.
Results:
Among this sample of predominantly Black (61%), reproductive-aged pregnant and recently pregnant participants, the majority (72%) generally supported fetal tissue research. The following three themes were identified: choice, respect, and meaning. Respondents discussed deeply personal nature of decisions surrounding fetal tissue research, emphasizing the importance of informed consent and respect for the person’s emotional state when approaching for consent. The ways in which participants regarded how to respectfully handle fetal tissue also shaped views about the acceptability of donation, both for and against. For many participants, fetal tissue donation to research represented one way of ascribing meaning to pregnancy termination or loss.
Conclusion:
Among this diverse sample of pregnant and recently pregnant individuals, most were supportive of fetal tissue donation for research. A better understanding of pregnant individuals’ views on this topic may lead to policies and practices that are congruent with the needs and values of people facing decisions regarding the disposition of fetal remains.
Precis:
Among a diverse sample of pregnant and recently pregnant individuals, most were supportive of fetal tissue donation for research, citing choice, respect and meaning.
Introduction:
The research use of human fetal tissue has led to major advances within science and medicine, primarily through the unique ability to create human cell lines from these tissues to study diseases.1 Beginning in the 1960s, fetal tissue procured from aborted fetuses has been used for an array of scientific purposes, including vaccine development1 and research in infectious diseases, neurologic disorders, type 1 diabetes mellitus, and other conditions.2, 3
Despite its widely recognized scientific benefits, the use of fetal tissue for research remains highly controversial in the United States (U.S.). The debate around fetal tissue research is largely due to its deeply rooted history in the ethically and politically complex discourse around abortion and the moral status of the fetus.4 Related questions have also been raised on how to handle fetal tissue and appropriate approaches to the informed consent process. In the interest of promoting fetal protection in response to concerns surrounding the vulnerability and potential exploitation of pregnant individuals5—especially the worry that a person undecided about pregnancy continuation could be persuaded to have an abortion in order to donate their fetal tissue for financial compensation or societal contribution4,5— federal regulations regarding such research have been adopted. These include prohibition against the sale of fetal tissue or financial compensation to pregnant individuals and the requirement that physicians defer obtaining informed consent for fetal tissue donation until after the pregnant individual has given informed consent for an abortion.6 Proponents of fetal tissue research maintain that safeguards, including strict regulations surrounding the informed consent process, can prevent inducement.7
Debates related to fetal tissue donation regulations and research protocols have been highly contentious. While the viewpoints of scientists, politicians and religious groups have framed these debates, views of the individuals who might personally face a decision about whether to donate fetal tissue have been absent. Stigma, silence, and secrecy around abortion8 often constrain these voices from entering public conversations on topics related to abortion, including fetal tissue research. And while research on fetal tissue after miscarriage is less common,9 silence around miscarriage has obscured views about disposition of fetal remains, especially after early pregnancy loss. While these perspectives are critical to inform debates surrounding complex ethical questions related to fetal tissue research and future policy decisions,10 the views of pregnant or recently pregnant individuals on this topic in U.S. contexts remain unknown.
In order to address this gap, we assessed pregnant individuals’ views on fetal tissue donation and fetal tissue research as part of two larger qualitative studies examining perspectives on participation in infectious disease research trials during pregnancy.11,12 Given the use of fetal tissue in infectious disease research,1,13 the opinions of pregnant individuals—as potential participants in or beneficiaries of such research—may inform policy conversations and future protocol design.
Methods:
The data for this analysis were collected between August 2016 and August 2017. This was a secondary analysis of data from two separate broader qualitative studies, in which we conducted in-depth, semi-structured qualitative interviews with pregnant and recently pregnant individuals to assess their views about participating in research for the prevention or treatment of HIV or Zika virus infection. The data from our HIV cohort were collected as a part of the Pregnancy and HIV/AIDS (PHASES) Project, to inform guidance for ethically acceptable research at the intersection of HIV and pregnancy.14 The data from our Zika cohort were collected as part of an effort to inform the development of vaccines in the context of the Zika pandemic.12
We used qualitative methodology in order to surface themes, generate hypotheses and provide descriptive information about topics for which there is little information and novel understandings are desired, as is the case with fetal tissue research. Our priority in using this methodology was to capture the range of considerations potentially relevant to individuals who might be in a position to participate in research that intersects with pregnancy, rather than identify the relative importance or prevalence of views across a representative sample of U.S. patients.15
In both studies, we used non-probabilistic sampling to recruit English-speaking participants at clinical sites to participate in interviews. In the service of our broader study aims, sampling included individuals either living with or at risk for infection. A total of 80 pregnant or recently (within 2 years) pregnant individuals living with or at risk for HIV in the U.S. were interviewed at three clinical sites, including University of North Carolina (UNC) in Chapel Hill, North Carolina, Johns Hopkins University (JHU) in Baltimore, Maryland, and Massachusetts General Hospital (MGH) in Boston, Massachusetts. Participants were at least 18 years of age.
Participants were asked questions about a variety of topics at the intersection of research and pregnancy, including willingness to participate in various types of research and views about selected research rules and practices.11,16 At the end of the interview, participants were asked about their views on fetal tissue research. Transcripts were reviewed iteratively for emergent themes.17 These methods, including information about our sample size, selection strategy, and interview guide development, are described in greater detail elsewhere.11,12
The research and analysis presented here were approved by the Institutional Review Boards at the University of North Carolina at Chapel Hill and the Johns Hopkins School of Public Health (PHASES), and the Massachusetts General Hospital Institutional Review Board (Zika).
Written, informed consent was obtained from all participants. Interviews were conducted individually and based on a semi-structured interview guide. For questions specific to the current analysis, the interviewer provided a brief description of fetal tissue research and then asked participants a series of questions about their views on donating fetal tissue to research (Box 1). Questions included whether they believe fetal tissue research should be allowed and explored their reasons for supporting or opposing it. The interviewer asked participants about their personal willingness to donate fetal tissue if they had an abortion or miscarriage in the future. Responses were probed for greater detail where appropriate. At the end of the interview, participants provided demographic information related to age, self-identified race and ethnicity, education, marital status, and pregnancy history. Race and ethnicity were included in our study as mandated by the US National Institutes of Health, consistent with the Inclusion of Women, Children and Minorities policy.
Box 1: Interview Guide Questions About Fetal Tissue Research.
Now I would like to ask you a couple of final questions about research involving women who have an abortion or have a miscarriage. Sometimes scientists conduct research using the tissue remains of the pregnancy to study different diseases.* Scientists call this “fetal tissue research.” Research like this is allowed if the woman provides consent, but there is a lot of disagreement about whether it should be allowed at all.
Do you think fetal tissue research should be allowed? Why or why not?
Do you think pregnant women who have a miscarriage or abortion in your community would be willing to give the remains of the pregnancy to scientists to do fetal tissue research? Why or Why not?
If you had a miscarriage or abortion sometime in the future when you got pregnant again, would you be willing to give the remains of your pregnancy to scientists to study in this way? Why or why not?
The interviews were recorded and transcribed verbatim; the interview data were analyzed using thematic analysis in NVivo 11 (QSR International, Melbourne, Australia).18 Codes were developed a priori from the interview guide and emergent themes identified from review of the data. To ensure intercoder reliability, 20% of the data were double coded, with discrepancies discussed until consensus was reached. These methods are described in greater detail elsewhere.11,12 Codes assigned to fetal tissue research were consistent across analysis of both datasets. Using data display matrices, overarching themes were identified and are presented below with representative quotes.
Results:
Overall, 80 participants met inclusion criteria. One participant did not provide any sociodemographic information and was excluded from the analysis. Our final sample for analysis consisted of 79 pregnant or recently pregnant persons, including 25 from UNC, 42 from JHU, and 12 from MGH (Table 1). Participants ranged from 19 to 45 years of age (mean = 29.7 years) with most in the 25- to 34-year-old age group. Among the 79 participants, 61 percent (n=48) self-identified as Black, 27 percent (n=21) had a college degree or higher, and 39 percent (n=31) were married. The majority of participants (78%) were multigravidas (n=62); 32 percent (n=25) had a history of miscarriage or stillbirth, and 28 percent (n=22) had a history of abortion (Table 1).
Table 1.
Sociodemographic and Reproductive Health Characteristics of Participants
| Characteristic | n | % |
|---|---|---|
| Age (years) | ||
| 18–24 | 19 | 24 |
| 25–34 | 38 | 48 |
| 35–44 | 21 | 27 |
| 45+ | 1 | 1 |
| Self-reported Race | ||
| Black | 48 | 61 |
| White | 23 | 29 |
| Asian | 1 | 1 |
| Other* | 7 | 9 |
| Self-reported Ethnicity | ||
| Hispanic | 9 | 11 |
| Non-Hispanic | 70 | 89 |
| Education | ||
| Some High School | 12 | 15 |
| High school diploma or equivalency certificate | 18 | 23 |
| Some College | 24 | 30 |
| Associate Degree | 4 | 5 |
| Bachelor’s graduate | 9 | 11 |
| Post graduate degree | 12 | 15 |
| Marital status | ||
| Single | 22 | 28 |
| Married | 31 | 39 |
| Living with partner | 21 | 27 |
| Divorced or separated | 3 | 4 |
| Widowed | 1 | 1 |
| Other | 1 | 1 |
| Gravidity | ||
| 1 | 17 | 22 |
| 2–3 | 30 | 38 |
| 4+ | 32 | 40 |
| Self-reported Reproductive History | 25 | 32 |
| Spontaneous abortion or stillbirth | 25 | 32 |
| Induced abortion | 22 | 28 |
| No history of spontaneous or induced abortion | 47 | 59 |
Reported race as Latina
Most (72%) of the participants were generally supportive of fetal tissue research and said it should be allowed (Table 2); 3% were supportive but only if a small tissue sample was used for fetal tissue research. A minority (13%) of participants were unsure if they supported fetal tissue research and said their answer would depend on the circumstances. A small proportion (8%) opposed fetal tissue research entirely.
Table 2.
Participants Overall Views on Fetal Tissue Donation for Research
| n | (%) | |
|---|---|---|
| Support | 57 | 72 |
| Support only if it’s a sample | 2 | 3 |
| Oppose | 6 | 8 |
| Unsure/depends | 10 | 13 |
| Did not respond | 4 | 5 |
| Total | 79 | 100 |
Three cross-cutting themes were identified in the data: choice, respect, and meaning. These cross-cutting themes arose across participant responses independent of their views of fetal tissue research. Each theme is discussed in further detail below.
When reflecting on fetal tissue research, many participants described the highly personal nature of decisions surrounding donation of fetal tissue and emphasized the pregnant person’s choice as a critical aspect of the discussion. Some respondents focused on the importance of promoting autonomy and recognized each pregnant person has their own needs, values, and levels of comfort when it comes to the decision of donating fetal tissue.
“I think it’s okay if the person is comfortable with that type of decision.”
-Age 31 years, Black
When asked about their own personal willingness to participate in fetal tissue research, many participants felt that choice was crucial.
“I would participate. If it was a choice; if it were my choice.”
-Age 36 years, Hispanic
Many participants discussed factors that would inform their choice to participate or oppose fetal tissue research. Several respondents noted that advancing the scientific body of knowledge was a motivating factor for considering donating their fetal tissue donation to research. Other participants cited religious beliefs as the primary reasons why they would not choose to participate in fetal tissue donation. Even among participants who were supportive of fetal tissue research, many discussed the highly personal nature of the decision and acknowledged the difficulty of making that choice for others.
“I think it’s a very personal decision and so I don’t think I can answer for other women.”
-Age 36 years, White
In discussions surrounding choice and autonomy in the context of fetal tissue donation and research, many respondents highlighted the importance of informed consent for research participation.
“I think—as long as the mother is fine with it and has given consent—then yes.”
-Age 36 years, White
Many participants also felt it was important to ensure the informed consent process was noncoercive such that pregnant individuals always had the option to decline.
“I think that if they do have the abortion or if they do have a miscarriage then they have the right to consent. If that’s what they want. Women get to consent or say no if they don’t want to.”
-Age 23 years, Hispanic
Many participants described respect as a primary consideration shaping their views on the practice and processes of fetal tissue research and donation. Participants highlighted the importance of showing respect for pregnant individuals’ emotions, noting that people experience pregnancy loss or termination differently, depending on the unique circumstances of the pregnancy and their life context.
“I feel like abortion is very emotional, but I feel like miscarriage is very, very emotional. It changes a person. It would be really inconsiderate if a woman had just miscarried, and they just removed her fetus to get her consent for a study.”
-Age 19 years, Black
Other respondents discussed the need for a respectful and sensitive approach when obtaining informed consent for fetal tissue donation, specifically surrounding the timing and circumstances of the pregnancy loss or termination.
“If she consents to it, but I also do think it’s a factor as well how soon you seek that consent because I think if it’s maybe too soon after, especially if it’s a miscarriage like it was in my case; probably not if it’s a miscarriage because that could be really, really traumatizing, but possibly with an abortion.”
- Age 33 years, Black
Whereas some participants focused on respecting the patient’s experience, others raised questions about what it means to respectfully handle fetal tissue. For some participants, respect motivated them towards fetal tissue donation for research, as they felt the tissue would have been discarded otherwise, and they would have preferred it be used to make a meaningful contribution.
“What are we going to do with it? Nothing…We’re going to toss it. Why toss it when someone can use it to fix someone else’s life?”
-Age 23 years, Black
One participant raised questions about how the fetal remains are sampled, expressing a desire to maintain the integrity of the tissue.
“If somebody wants to take a piece of my child, how much are they taking?… If they’re taking an arm, and they’re dissecting my baby—is it just a piece of skin? Is it a sample of blood? I would be mutilating, dissecting a child… I think it’s really disrespectful, but if it’s just taking samples of blood or a piece of skin, I don’t see why not. As long as you can tell it’s a child still, why not?”
-Age 36 years, Hispanic
For some participants who opposed fetal tissue donation, they expressed a desire for the tissue to be left alone entirely.
“I’m going to say no because the baby already dead and gone and need to rest.”
-Age 20 years, Black
One participant who opposed fetal tissue donation discussed the notion of respecting the fetal tissue in the context of rituals and burial ceremonies after pregnancy loss.
“In the case of miscarriage, I think that my miscarriages occurred at home, except for when I lost my son at 22 weeks. And they did ask if I was willing to donate his remains and I told them, ‘Hell, no. I’m going to have a service and bury my son.’”
- Age 37 years, Black
Participants verbalized a range of views about how making meaning after reproductive loss or termination would influence their views and decision about fetal tissue research. The circumstances of the pregnancy—whether it was a spontaneous or induced abortion— shaped responses on meaning, and personal donation intentions in complex and varied ways. Respondents expressed many views on what the fetal remains personally meant to them, with some respondents referring to it as “a loss,” while others used the terms “baby” and “child” to describe the tissue.
“I want to help other women… I lost my baby, so I’m going to give it to research.”
-Age 23 years, Hispanic
Further, some participants felt it was important to ensure the loss was not senseless, discussing how donating fetal tissue was a way of giving purpose and meaning to the pregnancy.
“At least you knew the child didn’t go in vain and something good could come out of it.”
-Age 32 years, Black
Some participants anticipated that donating fetal tissue after a miscarriage would be helpful for their grief, representing an altruistic way of turning their reproductive loss into something positive and meaningful.
“Some people might think like me and think, it was a loss but maybe I can benefit somebody through this. Make something negative positive.”
-Age 19 years, Black
When discussing how fetal tissue donation would be comforting and helpful as a way of ascribing meaning after reproductive loss, some participants drew comparisons to the organ donation process.
“I actually had a miscarriage, and it’s a very sad process, but if you could use it as a benefit, at the end of the day, if someone died and you gave the organs away, I think it’s always a positive to have more research or to benefit someone else.”
-Age 26 years, White
Some respondents who supported fetal tissue donation discussed hypothetical grief from pregnancy loss and desire to make meaning by helping other mothers.
“I can see the benefit because I’m going through this loss and I know what it’s like to suffer a great loss. Why would I want another mother— who I can help—to go through that?”
-Age 37 years, Black
While some participants evoked the importance of meaning in the context of spontaneous abortion, finding meaning through fetal tissue donation for research was also described in the context of an induced abortion:
“If I was approached with that, at the time when I had a termination, I would have done it… it will help future women. And it’s no risk, it’s nothing for me.”
-Age 36 years, Black
Discussion:
Among our sample of pregnant or recently pregnant individuals, most (72%) were generally supportive of fetal tissue research, consistent with existing literature. One prior study in the United Kingdom reported high support (94%) among women prior to abortion.26 Our qualitative findings expand this limited literature in highlighting three intersecting themes informing individuals’ views: choice, respect and meaning.
While choice is usually evoked around decisions about whether to continue pregnancy, here choice pertains to disposition of remains after pregnancy termination or loss. Participants viewed choice and informed consent as crucial for fetal tissue research, including timing in breaching the topic and initiating the consent process. Existing regulations on fetal tissue research have stringent requirements for informed consent including parameters for appropriate timing.6, 7 Yet while policy discussions about timing center on concerns of inducement, study participants focused more on how such timing could best respect individuals’ emotional state at the time of pregnancy loss or termination.
Participants emphasized respecting fetal tissue, which motivated different donation intentions. Donation intention depended for some on respecting physical integrity of the remains and for others on whether remains would be available to mourn with a burial ceremony, highlighting the widely recognized importance of ritual at the edges of life. However, with pregnancy loss and abortion there are frequently no rituals or burial ceremonies, contrasting those often offered after neonatal death.19, 20 Previous research indicates women want information about fetal tissue disposal after abortion,21 and that many desire a burial ceremony at the time of embryo disposal.22 Our findings further underscore the importance of handling reproductive remains respectfully after abortion or miscarriage, and that research and respect can go hand in hand.
Participants’ responses invoked a broader discourse about what fetal remains represent. While some described them as tissue, others felt they symbolized a baby or potential child. Public discourse is often framed dichotomously: those supporting fetal tissue research view remains as tissue and those opposing view remains as a baby. Participants offered more nuanced views, with some describing the tissue as a baby also expressing a personal intention to donate.
Although many participants had not personally experienced pregnancy loss or termination, most anticipated needing to make meaning from such experiences, and viewed donation as a means to do so. Positive reframing and constructing meaning can help people process complex emotions after pregnancy termination or loss.23, 24 Altruistic motivations for donation may facilitate coping,25 and reframing may help counter stigma associated with abortion.
Ultimately, our findings suggest that pregnant and recently pregnant individuals find value in the option of fetal tissue donation – for some, not just something they would be willing to do but an option meaningful or valuable to them. Our data highlight that the experience of pregnancy does not conclude with the end of pregnancy. Providing options and honoring individuals’ choices about disposition of fetal remains—including for research donation—is an important if overlooked element of ethical reproductive care, and a relevant consideration for policies and practices around fetal tissue research.
Our study has several limitations. First, only a third of our participants had personal experiences with pregnancy loss or termination. We elicited theoretical views surrounding fetal tissue donation, which may differ from those in practice. Future studies could assess views of individuals following pregnancy termination or loss. Second, we did not explicitly probe differences between fetal tissue donation after miscarriage versus termination, or how views about the pregnancy itself shape donation decisions, as our exploratory study focused on surfacing the range of salient themes. Future research, including quantitative methodologies, may help characterize prevalence and correlates of views, including their relationship to circumstances of loss or termination.
Third, our study population included a larger proportion of individuals living with HIV; participants may have felt more positively inclined toward research that may personally benefit them. Additionally, prior interview questions about controversial topics may have influenced responses. Fourth, our sample was geographically limited. Studying views on fetal tissue research in different regions of the U.S. and internationally might raise other considerations. Fifth, given the sociodemographic characteristics of our population, our findings may not be broadly generalizable, capture the full range of considerations, or characterize how structural issues or other vulnerabilities affect views on or trust in research. Last, it was beyond the scope of our study to assess participants’ views on how to approach informed consent for fetal tissue research and respectfully handle fetal remains. Future studies could employ qualitative and quantitative methods to assess diverse individuals’ specific preferences on these topics.
Fetal tissue research holds promise for development of therapeutics and vaccines. Recent policies have sought to restrict fetal tissue research, prompting public debate about the relative weights of scientific promise and moral peril associated with the use of fetal remains for research.27 Pregnant individuals’ perspectives suggest a more nuanced calculus— one in which use of fetal remains for research can be viewed as a choice that is both respectful to the fetus and meaningful to the individual whose pregnancy has ended. Our findings expand the range of considerations that should be incorporated into policymaking about the moral acceptability of fetal tissue research, including the lived experiences of childbearing individuals.
Supplementary Material
Funding:
This work was supported by the U.S. National Institutes of Health (R01AI108368 PI: Lyerly). The funders had no role in the preparation, review, or approval of the manuscript, or the decision to submit the manuscript for publication. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Footnotes
Financial Disclosure
Jean Anderson disclosed that they received money from stock in Abbvie, Merck, and Bristol Myers Squibb. They also received honoraria from the International AIDS Society in December 2019. The other authors did not report any potential conflicts of interest.
Each author has confirmed compliance with the journal’s requirements for authorship.
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