Abstract
Objective
We explored patients’ attitudes toward donating products of conception for research at the time of their aspiration abortion.
Study design
We surveyed patients presenting for first or second trimester aspiration abortion to the abortion service at British Columbia Women's Hospital over a 6-month period in 2018. Questions explored demographics, attitudes toward tissue donation, willingness to donate products of conception for research, and how the option of donating tissue influenced patients’ perception of their abortion. We analyzed quantitative data using descriptive statistics and answers to open-ended questions using content analysis.
Results
The partially tracked response rate to our survey was n = 35 of 46 (76%). Of 98 respondents included for analysis 77 (79%) were willing to donate their products of conception to research. Most respondents (n = 85, 93%), 49 (54%) of whom had ever been offered to actually donate tissue, reported that tissue donation would either positively change (n = 33, 36%) or not change (n = 52, 57%) how they felt at the time of their abortion. The majority of respondents (n = 25, 60%) who were not invited to donate their products of conception would have liked the opportunity to do so. Content analysis of open-ended responses from those willing to donate identified the categories of helping others, contributing to research and providing meaning beyond the respondents’ individual experience.
Conclusion
Patients’ willingness to donate products of conception to research and their associated positive attitudes provide important support for researchers and clinicians who are involved in research that uses products of conception.
Implications
Our data may inform research programs and abortion clinics involved in research using products of conception by better understanding the patient experience of being involved in this type of research.
Keywords
1. Introduction
Approximately 31% of Canadian women will have at least 1 abortion in their lifetime [
[1]
]. At the time of aspiration abortion, a unique opportunity exists to direct products of conception toward a research laboratory instead of discarding them as biological waste [[2]
]. These tissues, which include placenta, decidua, and fetal tissues, contribute to numerous areas of clinical research such as pregnancy complications, developmental biology, stem cell research, immunology, neurology, and oncology [2
, 3
, 4
, 5
, 6
, 7
]. Tissue biobanks, some of which include products of conception, have been developed worldwide, including in Canada, to facilitate high quality and accessible medical research [8
, 9
, 10
, 11
, 12
]. The translation of this biomedical research into clinical practice has had far reaching medical and public health benefits including Nobel Prize winning research on vaccine development from which nearly everyone in modern society has benefited [[13]
]. This research and how the tissue is being obtained has been associated with an ongoing ethical debate [[6]
,[13]
].Research evaluating patients’ attitudes toward being approached to donate products of conception to science is limited in patients seeking aspiration abortion, as is our understanding of how this process may influence their experience of the abortion. In a 1994 study in Edinburgh, patients attending a family planning clinic for a variety of services were asked to complete a survey about their attitudes around fetal tissue donation. Overall, 94% of women supported research using fetal tissues and 84% would allow research on their own fetus [
[14]
]. A British focus group discussion with both women who did and did not have an abortion identified general support for research but also concerns about ethical handling of fetal tissue [[15]
]. To our knowledge, no studies have examined attitudes among patients at the time of seeking an aspiration abortion and specifically compared attitudes toward tissue donation between patients who were and were not actually offered to donate their products to research.This study aimed to explore patients’: (1) attitudes toward tissue donation at the time of their aspiration abortion, (2) willingness to donate their pregnancy tissues to research, (3) whether willingness to donate was associated with any demographic characteristics, (4) feelings about being asked to donate their tissue, and (5) perception of how donating their products of conception for research may influence their abortion experience.
2. Methods
2.1 Setting
We completed this exploratory survey at the hospital-based abortion clinic of the British Columbia Women's Hospital, a single large tertiary referral center in Vancouver, BC, Canada. The clinic provides care to patients seeking medical and aspiration abortions for any indication up to 24+6 weeks’ gestational age.
2.2 Respondents
Eligibility criteria included being pregnant at any age, seeking a first or second trimester aspiration abortion, an ability to speak and understand English, and willingness to participate. Exclusion criteria were seeking an aspiration abortion for maternal or fetal indications including spontaneous abortion or seeking a medication abortion.
2.3 Survey instrument
We developed the survey instrument through literature review, expert consultation and mapping questions to our study aims. In consultation with experts in qualitative research design and/or abortion care through the University of British Columbia Women's Health Research Institute we designed the study and developed the survey. We piloted the survey with 24 patients attending the clinic to assess clarity of questions, appropriateness of language, and acceptability of topics, and modified the survey based upon their feedback.
The final survey instrument was a self-administered, anonymous, paper and pencil survey that took approximately 10 minutes to complete. The survey included a consent statement followed by sections on demographics (age, race, education, employment, income, relationship status, and religiosity), pregnancy data, knowledge about research and tissue donation, willingness to donate products of conception for research, attitudes and feelings around being asked to donate tissue, and perceived influence of tissue donation on their abortion experience. We further asked whether respondents had been invited to donate their products as part of a separate research project at this visit or at the time of a previous abortion. Open-ended questions explored reasons for willingness or unwillingness to donate, perceived advantages or disadvantages to tissue donation, and perceived influence of possible or actual participation in tissue donation. In the survey we defined and used the lay term “pregnancy tissue” in lieu of products of conception. We obtained research ethics approval through the University of British Columbia Children's and Women's Research Ethics Board.
2.4 Recruitment
Counsellors provided pregnancy options counselling and consented patients for their abortion. Thereafter, counsellors offered information about ongoing research in the clinic including our study. If interested, patients received a more detailed invitation letter. Those interested to participate received a paper copy of the survey which they completed in the pre-operative area. This approach is consistent with current guidelines on donation of fetal tissues for research [
16
, 17
, National Abortion Federation. National abortion federation guidelines relating to fetal tissue donation. 2015. Http://prochoice.Org/wp-content/uploads/naf-tissue-donation-guidelines.Pdf (accessed February 2, 2021)..
18
].National Abortion Federation. Fetal tissue donation position statement. 2015. Https://5aa1b2xfmfh2e2mk03kk8rsx-wpengine.Netdna-ssl.Com/wp-content/uploads/fetal-tissue-donation-position-statement-oct-2015.Pdf (accessed February 2, 2021)..
Simultaneously, products of conception collection for basic science research occurred 2 to 3 days per week through our clinic. We recruited every day of the week and invited both patients who had been asked to donate their products to basic science research as well as patients who had not been asked to donate.
2.5 Data Analysis
We chose a sample size target of 100 respondents for this convenience sample in order to estimate proportions of 20% to 30% (or 70%–80%) with +/-9% margin of error (alpha = 0.05).
We summarized respondents’ answers to demographic data using descriptive statistics. We stratified data regarding perceived influence of tissue donation by whether or not patients had ever been offered donation of their tissue for research. We performed statistical analyses in R []. Excluding missing data, p-values are from Kruskal-Wallis tests for continuous variables and Fisher's exact tests for categorical variables.
We analyzed answers to open-ended questions following content analysis [
[20]
]. Two researchers (AH and RR) independently reviewed all qualitative data, collaboratively developed a coding scheme, independently coded responses and summarized key findings. We used an inductive approach to develop codes as this was an exploratory study without preconceived notions of what categories would arise in the data. We resolved discrepancies in dominant codes and code prevalence through discussion to achieve consensus.3. Results
3.1 Quantitative results
One hundred respondents completed the survey between January and July 2018. We tracked eligibility and participation for 2 of the 6 months of recruitment in order to estimate a response rate. Of 73 patients seen by counsellors over that time, 46 met eligibility criteria and received study information (63%). Of those, 35 completed the survey (response rate = 76%). We excluded 2 surveys from our analysis; one for providing no information other than age, and the second for meeting an exclusion criteria (spontaneous abortion). We analyzed the remaining 98 surveys.
We present demographic characteristics in Table 1. The majority of the 98 respondents were white (n = 51, 52%), had completed at least some post-secondary education (n = 68, 69%), reported a household income above the poverty line ($30,000 CAD) (n = 53, 53%), and did not consider themselves to be religious (n = 65, 66%).
Table 1Demographics of respondents to survey at an abortion clinic in Vancouver, British Columbia (Canada) and their willingness to donate products of conception: January to July 2018 (N = 98)
| Willing to donate | ||||
|---|---|---|---|---|
| Demographic variable | N = 98 n (%) | No/Unsure n = 18 | Yes n = 77 | p-value |
| Age (y) | ||||
| Median Age (IQR) | 27 (23–32) | 25 (22-29) | 26 (23–32) | 0.30 |
| Race/Ethnicity | ||||
| White | 51 (52) | |||
| South Asian | 13 (13) | |||
| Indigenous | 7 (7) | |||
| Other | 24 (25) | |||
| Missing | 3 (3) | |||
| Education | ||||
| High School or less | 24 (25) | 6 (33) | 18 (23) | 0.84 |
| College or Trade/Technical/Vocational Training | 26 (27) | 4 (22) | 21 (27) | |
| Some College/University | 26 (27) | 4 (22) | 21 (27) | |
| Undergraduate or graduate or Professional Degree (Master's, PhD, MD, LLB, etc.) | 19 (20) | 4 (22) | 15 (20) | |
| Missing | 3 (3) | 0 (0) | 2 (3) | |
| Employment | ||||
| Full time | 49 (50) | |||
| Part time | 26 (27) | |||
| Not currently employed | 21 (22) | |||
| Missing | 2 (2) | |||
| Income (CAD) | ||||
| On social assistance | 3 (3) | 0 (0) | 3 (4) | 0.64 |
| Less than $10,000 | 5 (5) | 1 (6) | 4 (5) | |
| $10,000 - $29,999 | 33 (35) | 9 (50) | 24 (31) | |
| $30,000 - $49,999 | 18 (18) | 1 (6) | 15 (20) | |
| $50,000 - $69,999 | 15 (15) | 2 (11) | 13 (17) | |
| $70,000 - $89,999 | 10 (10) | 1 (6) | 9 (12) | |
| $90,000 or more | 10 (10) | 2 (11) | 8 (10) | |
| Missing | 4 (4) | 2 (11) | 1 (1) | |
| Relationship status | ||||
| Single | 12 (12) | |||
| In a relationship | 79 (81) | |||
| Separated / Divorced | 4 (4) | |||
| Missing | 3 (3) | |||
| Do you consider yourself to be a religious person? | ||||
| Yes | 27 (28) | 3 (17) | 24 (31) | 0.38 |
| No | 65 (66) | 13 (72) | 51 (66) | |
| Prefer not to say | 4 (4) | 2 (11) | 2 (3) | |
| Missing | 2 (2) | |||
| Religion | ||||
| None | 65 (66) | |||
| Catholic | 10 (10) | |||
| Protestant | 7 (7) | |||
| Sikh | 5 (5) | |||
| Other (Bahai, Buddhist, Hindu, Islam, other) | 5 (5) | |||
| Missing | 6 (6) | |||
| Importance of religion | ||||
| No religion | 65 (66) | |||
| Neutral | 5 (5) | |||
| Somewhat important | 13 (13) | |||
| Very important | 8 (8% | |||
| Missing | 7 (7) | |||
| Total Number of Pregnancies | ||||
| Gravida 1 | 47 (48) | 9 (50)99 9 (50) | 38 (49) | 1.0 |
| >1 | 48 (49) | 8 (44) | 38 (49) | |
| Missing | 3 (3%) | 1 (6) | 1 (1) | |
| Prior term or preterm deliveries | ||||
| 0 | 61 (62) | |||
| ≥1 | 37 (38) | |||
| Prior medical or aspiration abortions | ||||
| 0 | 55 (56) | |||
| ≥1 | 43 (44) | |||
| Prior miscarriages | ||||
| 0 | 83 (85) | |||
| ≥1 | 15 (15) | |||
| Current gestational age (weeks), patient reported | ||||
| ≤14 | 82 (84) | |||
| >14 | 8 (8) | |||
| Missing | 8 (8) | |||
a Indigenous is inclusive of Aboriginal and First Nations people
[30]
.b Poverty line in Canada is $30,000 CAD
[22]
.c p values are from Kruskal-Wallis tests for continuous variables and Fisher's exact test for categorical variables. We calculated these for selected demographics.
The majority (n = 77, 79%) of respondents indicated they would be willing to donate their products of conception to research. The remaining respondents were not willing (n = 12, 12%), unsure (n = 6, 6%), or did not answer the question (n = 3, 3%). Half (n = 49, 54%,) had been invited to donate their products for separate basic science research either at the time of this or a prior abortion. Of those, 38 (78%) had donated their products. Of the 11 (22%) who had declined to actually donate, 3 (27%) stated that they would be willing to donate tissue to research. Willingness to donate tissue for research was similar between 49 respondents who were and 42 who were not actually asked to do so (n = 41, 80% vs n = 34,79%; p = 0.91). None of the demographics, including education, household income and religious affiliation, were significantly associated with willingness to donate tissue to research as we show in Table 1.
Respondents’ knowledge surrounding research on products of conception was limited (Table 2). The majority were not aware of the possibility to donate products for research at the time of abortion (n = 73, 75%). The majority reported advantages to donating products to research (n = 52, 53%).
Table 2Summary of knowledge about tissue donation and comfort/feelings being asked to donate products of conception to research among all respondents in an abortion clinic in Vancouver, British Columbia (Canada): January to July 2018 (N = 98)
| Variable | N = 98 n (%) |
|---|---|
| Question: Were you aware, prior to today, that it is possible to donate pregnancy tissue at the time of an abortion for research purposes? | |
| Yes | 20 (20) |
| No | 73 (75) |
| Unsure | 4 (4) |
| Missing | 1 (1) |
| Question: Do you know of any potential uses/areas of research? | |
| Yes | 21 (21) |
| No | 49 (50) |
| Unsure | 27 (28) |
| Missing | 1 (1) |
| Question: Are there any advantages to donating pregnancy tissue to research? | |
| Yes | 52 (53) |
| No | 7 (7) |
| Unsure | 35 (36) |
| Missing | 4 (4) |
| Question: How comfortable would you be/are you with being asked to donate tissue? | |
| Comfortable or very comfortable | 57 (58) |
| Neutral | 21 (21) |
| Uncomfortable or very uncomfortable | 18 (18) |
| Missing | 2 (2) |
| Question: How would/does being asked to donate tissue make you feel? | |
| Good or very good | 43 (44) |
| No different | 45 (46) |
| Bad or very bad | 8 (8) |
| Missing | 2 (2) |
On a scale of very comfortable to very uncomfortable, the majority (n = 78, 79%) of respondents would be neutral to very comfortable being asked to donate their products. On a scale of very good to very bad, most respondents would feel no different (n = 45, 46%) or good to very good (n = 43, 44%) being asked to donate products. Among the 11 who declined to donate products (23% of 49 who were actually asked to donate), 8 (73%) stated they would feel uncomfortable being asked to donate products of conception.
Table 3 summarizes how respondents thought tissue donation would change how they felt about their abortion. We stratified based on whether they had ever been invited to participate in research involving actual donation of their products and, if so, stratified based on whether they donated. Of 38 respondents who had donated, 21 (55%) reported that donation either positively or very positively changed how they felt about their abortion. The remainder 17 (45%) reported that it did not change how they felt. Of the 11 who declined to donate, the majority stated that it would not change how they felt (n = 6, 55%) and 2 respondents (18%) stated that if they donated their tissue, it would positively change how they felt. Among respondents never invited to actually donate their tissue, the majority reported that donating their products to research would not change (n = 29, 69%) or would positively change (n = 10, 24%) how they felt about their abortion. Due to small numbers in these subgroups, power was insufficient to demonstrate statistically significant differences. The majority of respondents (n = 25, 60%) who had never been invited to donate their products of conception would have liked the opportunity to do so. Further, 72 (74%) of respondents supported a pregnancy tissue biobank to facilitate research in women's health.
Table 3Perceived influence of tissue donation on how respondents felt about their abortion among those who reported on their participation in tissue donation at an abortion clinic in Vancouver, British Columbia (Canada): January to July 2018 (n = 91)
| Invited to participate in tissue donation research | Not invited to participate in tissue donation research (n = 42), n (%) | ||
|---|---|---|---|
| Donated (n = 38), n (%) | Declined (n = 11), n (%) | ||
| How do you think donating your pregnancy tissue has changed how you feel about your abortion? | |||
| Positively or very positively | 21 (55) | - | - |
| No change | 17 (45) | - | - |
| Negatively or very negatively | 0 (0) | - | - |
| How do you think donating your pregnancy tissue would change how you feel about your abortion? | |||
| Positively or very positively | - | 2 (18) | 10 (24) |
| No change | - | 6 (55) | 29 (69) |
| Negatively or very negatively | - | 3 (27.3) | 2 (5) |
| Missing | - | - | 1 (2) |
| Would you have liked the opportunity to donate your tissue to research today? | |||
| Yes | - | - | 25 (60) |
| No | - | - | 5 (12) |
| Unsure | - | - | 10 (24) |
| Missing | - | - | 2 (5) |
Percentages were calculated based on the total number of respondents for the individual variable.
a Seven respondents did not answer whether they were asked to participate in tissue donation research.
3.2 Content analysis of answers to open-ended questions
In the answers to open-ended questions regarding reasons why respondents would or would not be willing to donate tissue to research we identified the positive categories of “support for research” and specifically “support for women's health research,” “helping others,” “meaning beyond their individual experience” among 65 of 73 (89%) who were willing to donate their tissue and answered this question. Eight of 73 (11%) respondents indicated being willing to donate as they did not see a reason not to (“equivocal”). Categories among 7 of 7 (100%) respondents who were unwilling to donate tissue and who answered the question were “being uncomfortable” and “overwhelmed”. We identified the same categories as well as “contributing to education” in the answers to the question about advantages to donating tissue for research. The only disadvantage respondents reported was “being uncomfortable” being asked to donate tissue for research.
Our survey included open-ended questions regarding how donating or potentially donating tissue to research would change how they felt about their abortion. We stratified the analysis by whether respondents had ever been asked to actually donate their products of conception and by whether they had donated or declined. We identified similar positive and negative categories of responses as in the previous questions, with “meaning beyond the individual experience” being the most common category.
4. Discussion
Our survey explored patients’ attitudes toward donation of products of conception for research at the time of their aspiration abortion among both patients who were and were not ever offered to actually donate their products to research at this or a prior abortion. Willingness to donate products was almost 80% in both groups. The majority of respondents who were not offered tissue donation would have liked the opportunity to do so. Most respondents reported advantages to donating tissue and endorsed that they would be comfortable being asked to donate. Similar willingness to donate tissue was reported in a Scottish survey, which included some patients accessing abortion services [
[14]
]. In contrast to our study, none of these patients were offered to actually donate tissue concurrently.The education level and proportion of respondents reporting an income below the poverty line in our sample were comparable to both US abortion data [
[21]
] and reproductive aged female respondents to the BC Sexual Health Indicators survey [[22]
]. Sixty-six percent of our respondents did not consider themselves religious which is higher than in the BC population from 2011 Statistics Canada Census data (44%), possibly related to reproductive age female respondents being younger than the overall provincial population [[23]
]. Younger age has been associated with being less religious [Statistics Canada. British Columbia (code 59) (table). National household survey (nhs) profile. 2011 National household survey. Statistics canada catalogue no. 99-004-xwe. Ottawa. Released september 11, 2013. Http://www12.Statcan.Gc.Ca/nhs-enm/2011/dp-pd/prof/index.Cfm?Lang=e (accessed May 13, 2022). 2013.
[24]
]. In the US only 38% of patients seeking an abortion reported no religious affiliation [Cornelissen L. Religiosity in Canada and its evolution from 1985 to 2019. https://www150.Statcan.Gc.Ca/n1/pub/75-006-x/2021001/article/00010-eng.Htm. (accessed May 23, 2022). Ottawa, Canada: Statistics Canada.; 2021. p. 20.
[21]
]. While in our survey neither education, household income, nor religious affiliation were associated with willingness to donate tissue, it is possible that in a larger sample an association could be detected.Our survey identified categories of responses associated with willingness to donate tissue to research and seeing advantages in doing so including “contribution to research” and specifically women's health research, “helping others” and “providing meaning outside of their individual experience”. The latter became the most common category in respondents with positive attitudes and feelings toward tissue donation both among those who actually had donated tissue and those who had not been offered participation in tissue donation research. Our data show that patients undergoing an abortion see value contributing to a larger good by supporting research including the development of a biobank. Previous work supports the notion that post-abortion coping is improved by “positive framing” of the abortion, oneself and positive social support [
[25]
]. We, therefore, postulate that a positive perspective, experience, or provision of meaning outside one's individual experience can contribute to patients’ coping and positive sense of self.Less than 20% of respondents reported they would feel or actually were uncomfortable being asked to donate tissue, and only 8% stated it would make them feel bad to be asked to donate tissue. This is reassuring for providers and researchers approaching people for tissue donation. Responses associated with unwillingness to donate and negative attitudes and feelings toward tissue donation fell into 2 categories: “being uncomfortable” or “being overwhelmed”. This is in the context of limited respondents’ knowledge surrounding research on products of conception. Increased education and public awareness of the advantages of research using products of conception may allow patients more time to process the option of donating tissue and help overcome uncertainty and discomfort around this topic. Concerns of coercion to choose abortion for tissue donation or other research purposes have led to policies that require patients to consent for their abortion before they can be invited to participate in tissue donation [
[13]
,16
, 17
, National Abortion Federation. National abortion federation guidelines relating to fetal tissue donation. 2015. Http://prochoice.Org/wp-content/uploads/naf-tissue-donation-guidelines.Pdf (accessed February 2, 2021)..
18
]. Accordingly, and following our ethics requirements, we recruited patients after their decision to have an abortion. Consistent with prior research [National Abortion Federation. Fetal tissue donation position statement. 2015. Https://5aa1b2xfmfh2e2mk03kk8rsx-wpengine.Netdna-ssl.Com/wp-content/uploads/fetal-tissue-donation-position-statement-oct-2015.Pdf (accessed February 2, 2021)..
[14]
,[26]
], none of the qualitative answers suggested that patients felt coerced to have an abortion in order to donate their tissue. Additionally, none had ethical concerns about tissue collection or handling.Strengths of our study include simultaneous survey of 3 different patient groups: (1) those who had been offered to actually donate tissue and agreed, (2) those who had been offered and declined, and (3) those who had not been offered to donate, hence speaking hypothetically about their feelings, but also indicating whether they would have liked to be offered to donate their tissue. The British Columbia Women's Hospital abortion clinic is the largest in the province; caring for patients from a broad geographic catchment, suggesting our exploratory sample drew from the population accessing abortion services in British Columbia.
Generalizability of our results is limited by several factors. Our exploratory sample was small. We might have been underpowered to detect associations between willingness to donate products of conception and demographic factors. We excluded patients presenting for abortion for fetal or maternal indications. We cannot generalize our findings to those patients or to a Canadian or international context, as perceptions and experiences may differ between our study sample and those groups. While we did not record the response rate for the entire sample, the response rate collected for a third of our respondents was acceptable (76%) [
[27]
,[28]
] and the demographics of our study population are comparable to Canadian abortion statistics on age, gestational age and prior pregnancies [[29]
].Canadian Institute for Health Information. Induced abortions reported in canada in 2019. In: CIHI, editor. Ottawa, Canada. [ https://www.cihi.ca/sites/default/files/document/induced-abortions-reported-in-canada-in-2019-en.xlsx ] (accessed February 15, 2021).: Government of Canada; 2021.
Patients’ willingness to donate products of conception to research and their associated positive attitudes provide important support for researchers and clinicians who participate in research using products of conception. Our data may inform research programs, universities and abortion clinics involved in research using products of conception by better understanding the patient experience of being involved in this type of research.
Acknowledgments
The authors thank the Women's Health Research Institute and the Comprehensive Abortion and Reproductive Education program of the British Columbia Women's Hospital. The authors would like to thank Nicole Prestley and Marketa Waldrum of the Women's Health Research Institute and Marianne Vidler of the British Columbia Children's Hospital Research Institute for their contributions.
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Article info
Publication history
Published online: June 15, 2022
Accepted:
June 3,
2022
Received in revised form:
May 24,
2022
Received:
November 22,
2021
Footnotes
☆Disclosures and Funding:Conflicts of intrest: The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this article.Funding: This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.
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