Survey report of gamete donors' and recipients' preferences regarding disclosure of third party reproduction outcomes and genetic risk information

Lindheim, Steven R.; Porat, Natalie; Jaeger, Ami S.

doi:10.1111/j.1447-0756.2010.01333.x

Cited by 9 publications

(6 citation statements)

References 24 publications

(46 reference statements)

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“…They admitted that updated medical and genetic history was valuable, especially in cases of medical emergencies. These results are consistent with a questionnaire-based study done in an oocyte donor programme (Lindheim et al, 2011). The sample of 382 participants comprised predonation donors, donors undergoing the process and ante-or post-partum recipients.…”

Section: The Minimal Justification Of a Gedrsupporting

confidence: 87%

“…At first, to respect a plurality of values, a GEDR would have to deal with variable opinions regarding the right to be informed of unanticipated testing results, adverse outcomes (Lindheim et al, 2011) and predispositions to heritable adult-onset disorders (Daar and Brzyski, 2009). Similarly, a GEDR may confront affected parties with the possibility of a medical intervention to reduce genetic risk, it may entail different notions of genetic risk (Lindheim et al, 2011) and different conceptions of the severity of disease (Wertz and Knoppers, 2002;C Bouffard and F Duplain-Laferrière, unpublished data). Lindheim et al (2011) also suggested that some people would fear that participating in a GEDR would create a legally binding obligation to transmit truthful medical information.…”

Section: The Recognition Of Beneficiaries' Continued Free Agencymentioning

confidence: 99%

“…Similarly, a GEDR may confront affected parties with the possibility of a medical intervention to reduce genetic risk, it may entail different notions of genetic risk (Lindheim et al, 2011) and different conceptions of the severity of disease (Wertz and Knoppers, 2002;C Bouffard and F Duplain-Laferrière, unpublished data). Lindheim et al (2011) also suggested that some people would fear that participating in a GEDR would create a legally binding obligation to transmit truthful medical information. Overall the necessity to respect beneficiaries' future free agency implies a continuous consent mechanism that would allow for the possibility of withdrawing from the registry.…”

Section: The Recognition Of Beneficiaries' Continued Free Agencymentioning

confidence: 99%

See 2 more Smart Citations

Strengths and pitfalls of Canadian gamete and embryo donor registries: searching for beneficent solutions

Couture

Dubois

Drouin

et al. 2014

Reproductive BioMedicine Online

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For the gamete and embryo donation community, it is well recognized that the implementation of a gamete and embryo donor registry (GEDR) represents a good initiative to ensure the best possible health conditions for donor-conceived individuals. Be they national, institutional or independent, GEDR can play a major role in the transmission of health-related genetic and medical information. However, from a bioethical analysis standpoint, GEDR raise many questions regarding the extent of their beneficent nature. Based on the recent Canadian GEDR aborted attempt, this article will focus on bioethical issues and paradoxes that can impact the wellbeing of donor-conceived individuals, half-siblings, donors and parents. On one hand, the implementation of a GEDR can be ethically justified as a beneficent action towards lessening harm associated with the transmission of hereditary disease and increasing the effectiveness of preventive and therapeutic approaches. On the other hand, examined through the concept of nonpaternalistic beneficence, GEDR challenge us to recognize beneficiaries' free agency, as well as the importance to transmit reliable and pertinent information. Ultimately, beyond an individualistic application of the principle of beneficence, socioethics invite us to consider consistency with societal values as a prerequisite for achieving a common good. Because the issue of whether or not to protect the donor's anonymity occupies the forefront of the discussion surrounding gamete and embryo donation, there is less interest in other initiatives, which may be implemented to ensure the best possible medical and psychosocial conditions for donor-conceived individuals. In this article, we propose a bioethical analysis of the use of gamete and embryo donor registries (GEDR) from the angle of the principle of beneficence. More specifically, we will concentrate on the Canadian situation regarding GEDR. We will look at the strengths and pitfalls of this mechanism and suggest a solution to maximize the benefits of a GEDR. Many have suggested that such an initiative could have a beneficial impact on the wellbeing of donor-conceived individuals, half-siblings, donors and parents, by ensuring the constant flow of health-related medical and genetic information. As self-evident as the social acceptability of a GEDR may seem, we wish to show the limitations of the benefits that a registry is supposed to provide. We argue that a GEDR has to do more than simply transmit health-related information between parties. It also has to be based on pertinent and reliable data, be useful for health promotion and recognize beneficiaries' free agency. Ultimately, the implementation of a GEDR has to take into consideration wider social values.

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Section: The Minimal Justification Of a Gedrsupporting

confidence: 87%

Section: The Recognition Of Beneficiaries' Continued Free Agencymentioning

confidence: 99%

Section: The Recognition Of Beneficiaries' Continued Free Agencymentioning

confidence: 99%

See 1 more Smart Citation

Strengths and pitfalls of Canadian gamete and embryo donor registries: searching for beneficent solutions

Couture

Dubois

Drouin

et al. 2014

Reproductive BioMedicine Online

View full text Add to dashboard Cite

show abstract

“…Evidence of attitudinal changes towards openness in relation to donor conception includes the increasing likelihood that parents will disclose the use of a gamete donor to their children (Blake et al , 2010; Söderström-Anttila et al , 2010), that parents of donor-conceived children want to make contact with ‘donor siblings’ (Freeman et al , 2009), that some anonymous donors welcome the removal of donor anonymity (Daniels et al , 2012), that change in donor anonymity legislation has not necessarily resulted in a decline in the number of men willing to donate sperm (Shukla et al , 2013), and the influence of counselling on donors' and recipients' willingness to disclose the use of donor gametes to children conceived as a result (Hammarberg et al , 2008). Donor-conceived people's right to medical and genetic information about the donor is asserted (Lindheim et al , 2011; Ravitsky, 2012). Contemporary evidence suggests that it is best for donor-conceived children to be informed by their parents at an early age about the means of their conception (Nuffield Council on Bioethics, 2013).…”

Section: Introductionmentioning

confidence: 99%

Proposed legislative change mandating retrospective release of identifying information: consultation with donors and Government response

Hammarberg

Johnson²,

Bourne³

et al. 2013

Human Reproduction

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STUDY QUESTIONHow do gamete donors who presumed they could remain anonymous respond to proposed legislation to retrospectively remove anonymity?SUMMARY ANSWERA little more than half of the donors opposed the recommendation to introduce legislation to remove donor anonymity with retrospective effect.WHAT IS KNOWN ALREADYAn increasing proportion of parents disclose their origins to their donor-conceived children and growing numbers of donor-conceived adults are aware of how they were conceived. Research indicates that access to information about the donor is important to donor-conceived people. However, worldwide most donor-conceived people are unable to find any identifying information about the donor because of the practice of anonymous gamete donation.STUDY DESIGN, SIZE, DURATIONThis study adopted a qualitative research model using semi-structured interviews with gamete donors that included open questions. Interviews with 42 volunteers were conducted between December 2012 and February 2013.PARTICIPANTS/MATERIALS, SETTING, METHODSBefore 1998 gamete donors in Victoria, Australia, were able to remain anonymous. Pre-1998 donors were invited through an advertising campaign to be interviewed about their views on a recommendation that legislation mandating retrospective release of identifying information be introduced.MAIN RESULTS AND THE ROLE OF CHANCEDonors were almost evenly split between those who supported and those who rejected the recommendation to introduce legislation to remove donor anonymity with retrospective effect. About half of the donors who rejected the recommendation suggested the compromise of persuading donors voluntarily to release information (whether identifying or non-identifying) to donor-conceived people. These donors were themselves willing to supply information to their donor offspring. The findings of this study informed the Victorian Government's response to the proposed legislative change. While acknowledging donor-conceived people's right of access to information about their donors, the Government decided that identifying information should be released only with the consent of donors and that donors should be encouraged to allow themselves to be identifiable to their donor offspring.LIMITATIONS, REASONS FOR CAUTIONThere is no way of knowing whether participants were representative of all pre-1998 donors.WIDER IMPLICATIONS OF THE FINDINGSThe balancing of donors' and donor-conceived people's rights requires utmost sensitivity. All over the world, increasing numbers of donor-conceived people are reaching adulthood; of those who are aware of their mode of conception, some are likely to have a strong wish to know the identity of their donors. Legislators and policy-makers in jurisdictions permitting anonymous gamete donations will need to respond when these desires are expressed, and may choose to be guided by the model of consultation described in this paper.STUDY FUNDING/COMPETING INTERESTSThe study was funded by the Victorian Department of Health. The authors have no conflicts of interest ...

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“…A study of previous oocyte donors [12] explored the medical and psychosocial issues which have emerged from having been a donor, while another study [13] reported on the views of oocyte donors (pre-donation, and current) regarding similar issues that were explored with the sperm donors in the current study.…”

Section: Introductionmentioning

confidence: 99%

Genetic and health issues emerging from sperm donation—The experiences and views of donors

Daniels¹,

Kramer²

2013

ARSci

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164 previous sperm donors completed an online survey regarding health and genetic experiences and views. Results highlight that donors desire to act responsibly with recruiting facilities is not always possible. Objective: Obtaining the views and experiences of sperm donors regarding health and genetic matters. Design: Online survey. Setting: Not applicable. Participants: 164 previous sperm donors. Interventions: Not applicable. Main outcome measures: Views and experiences on health and genetic issues. Results: A variety of approaches are adopted by recruiting facilities in regard to selection and postdonation factors. The vast majority of donors said they had not been contacted by the facility they donated at to update their medical information, while almost one quarter of donors indicated that a health or genetic risk factor had occurred. A great majority of donors felt that they had not received any education or counselling on the potential curiosities of donor conceived people. Donors sought to be honest and open with staff but often found there were difficulties in doing so. Conclusions: Overall, donors indicate that they see donating as involving responsibilities to the offspring and families. The study highlights however that their ability to act responsibly is limited by some of the interactions or lack of them with the facilities where they donated. Implications for recruiting facilities need to be considered.

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Survey report of gamete donors' and recipients' preferences regarding disclosure of third party reproduction outcomes and genetic risk information

Cited by 9 publications

References 24 publications

Strengths and pitfalls of Canadian gamete and embryo donor registries: searching for beneficent solutions

Strengths and pitfalls of Canadian gamete and embryo donor registries: searching for beneficent solutions

Proposed legislative change mandating retrospective release of identifying information: consultation with donors and Government response

Genetic and health issues emerging from sperm donation—The experiences and views of donors

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