Braverman, Andrea

Elster, Nanette R.

English

Via Sapientiae: The Institutional Repository at DePaul University

DePaul Journal of Health Care Law Volume 12 Issue 1 Winter 2009 Article 7 October 2015 The Future is Now: A Voluntary Gamete Donor Registry is Feasible Nanette R. Elster Andrea Braverman Follow this and additional works at: https://via.library.depaul.edu/jhcl Recommended Citation Nanette R. Elster & Andrea Braverman, The Future is Now: A Voluntary Gamete Donor Registry is Feasible, 12 DePaul J. Health Care L. 195 (2009) Available at: https://via.library.depaul.edu/jhcl/vol12/iss1/7 This Article is brought to you for free and open access by the College of Law at Via Sapientiae. It has been accepted for inclusion in DePaul Journal of Health Care Law by an authorized editor of Via Sapientiae. For more information, please contact digitalservices@depaul.edu. THE FUTURE IS NOW: A VOLUNTARY GAMETE DONORREGISTRY IS FEASIBLENanette R. Elster, JD, MPHAndrea Braverman, Ph.D.On March 28, 2008, the Health Law Institute at DePaul UniversityCollege of Law co-sponsored a one-day symposium entitled, "TrackingChange: The Feasibility of a Voluntary Gamete Donor Registry in theUnited States." The symposium was a gathering of professionals froma range of disciplines working in the field of assisted reproductivetechnology (ART). Attorneys, reproductive endocrinologists, medicaldirectors of sperm banks, mental health professionals, and informationtechnology experts convened to discuss where a need for a gametedonor registry exists, what issues a registry must take into account fromthe perspective of the myriad stakeholders impacted and what the risksand benefits of such an undertaking might be.Summarizing this first of its kind national meeting in one shortessay is a difficult task. What makes this task even more daunting is tosummarize the genesis of this meeting - the many months of discussionthat culminated in this one day event that brought together groups ofindividuals that at times have been at odds regarding this particulartopic. The issue of collection, storage, and dissemination of genetic,medical, mental health, and social information about gamete donorsand their offspring has been rife with controversy.1 In recent years,however, as the use of donor gametes has increased,2 children ofgamete donation have come of age, 3 and genetic medicine is no longerjust the wave of the future,4 the topic has been more in the forenationally and internationally.1 See, e.g., Johnson v. Superior Court, 80 Cal. App. 4th 1050; 95 Cal. Rptr. 2d 864(2000) (Parents of a child affected with a genetic condition sought to depose ananonymous sperm donor); Denise Grady, "As the Use of Donor Sperm Increases,Secrecy Can Be a Health Hazard," The New York Times, June 6, 2006 at 5.2 CDC, "2005 Assisted Reproductive Technology (ART) Report," 2007 ( The numberof cycles using donated eggs was 16,661 in 2005, this is up significantly from over adecade ago when just over 5,000 cylces were reported using donor egg, CDC, "1996Assisted Reproductive Technology Success Rates," (1998)).3 See, e.g., Scott Harris, "Families on the Cusp of an Uncharted Realm;Relationships* As They Approach 18, the Children of Women who Patronized aPioneering Sperm Bank Face the Choice of Learning Donor Fathers' Identities," LosAngeles Times, May 3, 2002 at Part 5, Page 1.4 See, e.g., Human Genome Project Information, "Medicine and the New Genetics,"at http://www.ornl.gov/sci/techresources/HumanGenome/medicine/medicine.shtmllast visited on June 2, 2008.DEPAUL JOURNAL OF HEALTH CARE LAWIn October 2006 the authors of this essay reminisced about aneducational panel we had both participated in four years earlierregarding disclosure of gamete donor information. We marveled athow timely such a topic had become in four short years. Ourreminiscing soon turned to brainstorming as we contemplated how torevitalize this discussion among the many disciplines working in ART.In just a few hours we had developed a list of sixty or moreprofessionals from a full range of disciplines whom we believed wouldcontribute greatly to a discussion of what information about gametedonors, their offspring and the recipients should be collected, stored,and maintained and under what circumstances. Our next task was todecide what to do with this list.Despite the vast expertise we had identified, we needed astructure or a framework to bring this group together for a productivediscussion of the issues. Our central question being: Is a gamete donorregistry even feasible? We soon concluded that the question was toobig for us to answer and thus a roundtable discussion would be aproductive way to measure the interest in a donor registry, identify thepotential pitfalls; concerns and benefits. With no funding nor anyformal organizational support we reached out to the sixty individualswe identified and invited them to attend a half day discussion whichwould proceed the 2007 Annual Meeting of the American Society forReproductive Medicine. To our great amazement, over half of theinvitees attended and nearly all the invitees expressed great interest inthe discussion.The meeting, as anticipated, generated far more questions thananswers, however, one thing became very clear - interest was piqued.All involved believed that examining the feasibility of a gamete donorregistry was vital, however, no one was quite willing to take a nextstep. As the meeting concluded, attendees turned to these authorsposing the question "What's next?" And, thus the idea for the"Tracking Change" symposium was born.Recently, concerns about secrecy in the use of donor gameteshave led to regulatory responses in a number of European nations andAustralia.5  The United States, greatly concerned with potentialinfringement on reproductive rights and privacy, however, continues to5 See, e.g., Janssens, et. al., "A New Dutch Law Regulating Provision of IdentifyingInformation of Donors to Offspring: Background, Content and Impact," 21 HumanReproduction 852-856 (2006), Human Fertilisation and Embryology Authority,Statutory Instrument 2004 No. 1511, "The Human Fertilisation and EmbryologyAuthority (Disclosure of Donor Information) Regulations 2004[VOL. 12.1:195SYMPOSIUMINTRODUCTIONtake a somewhat laissez faire approach with piecemeal solutions beingimplemented by individual sperm banks 6 or consumer groups such asthe Donor Sibling Registry7 and the Single Mother's by Choice SiblingRegistry8 and for-profit entities such as "Genetisafe" 9 which seek, for afee, to keep gamete recipients up to date on significant healthconditions of the donor. These lay registries have emerged withoutpublic discourse, public accountability, multidisciplinary expertise,uniformity or oversight or any other enforcement mechanism.Additionally, legislative proposals have begin to emerge in the UnitedStates' ° , and thus the time had come for those professionals mostdirectly impacted by the collection, storage and dissemination of suchinformation to take the lead in the discussion and develop a solutionthat is feasible; acceptable to donors, recipients and offspring alike; andis cost effective and not unduly burdensome. Such a solutionnecessitates consideration of the implications for all stakeholders suchas privacy and confidentiality including compliance with the HealthInsurance Portability and Accountability Act (HIPAA), reproductivefreedom, and children's rights.Creation of a centralized, voluntary gamete donor registry isone mechanism that could facilitate collection and maintenance ofpertinent medical, health and genetic information; may help avoididentity issues or familial disconnect experienced by some childrenborn as a result of gamete donation; would be useful in avoidinginadvertent consanguinity and enable offspring to make more informedreproductive decisions; would enable ART programs to shareinformation with one another about donors; would ensure that donorsdo not participate in multiple programs and more times than ismedically recommended; and could facilitateoutcomes/epidemiological research which is currently lacking despite,the thousands of birth annually in the U.S. utilizing donated gametes.The Tracking Change symposia examined the feasibility oftaking a multi-disciplinary approach to developing a registry, includingpractical, theoretical and ethical benefits and barriers with a particular6 See, e.g. California Cryobank athttp://www.cryobank.con/siblingregistry2/faqs1.cfm7 The Donor Sibling Registry at http://www.donorsiblingregistry.coml last visitedJune2, 2008.8 Single Mother's by Choice Sibling Registry athttp://www.singlemothersbychoice.com/sibling.html last visited June 2, 2008.9 "Genetisafe," at http://www.genetisafe.com/ last visited June 2, 2008.10 Virginia HB412 "Gamete donors; anonymous donations thereof prohibited inmedical procedures," Introduced January 2006.2009]DEPAUL JOURNAL OF HEALTH CARE LAWfocus on the legal and policy considerations necessary to itsimplementation, acceptance, and effectiveness. These considerationswere discussed from the perspectives of the range of stakeholders:physicians; fertility centers/sperm banks; recipients of donor gametes;donors; mental health professionals who work with recipients, donorsand offspring of donor gametes; and society. One issue becameabundantly clear throughout the day. . . to develop an effective registryrequires a balancing of interests of the child, donor, intended parents,health care professionals, and society in addition to a risk/benefitanalysis in an effort to protect, promote and enhance this importantreproductive option and ensure the physical and emotional safety andprivacy of all participants including the resultant offspring.What follows is a detailed outline of the most salient issues thatshould be considered in the development and implementation of anygamete donor registry in the United States.Overarching IssuesA. Need for a registrySNo" Yes: Voluntary or MandatoryB. Appropriate information to the collected regarding:SDonor" Offspring" Intended parentsC. Length of time information remains availableD. Function of the registrySProvide information1. Offspring2. Medical professionals3. Parents4. Donors5. ResearchersMedical Considerations> FDA concerns> Safety> Recipient> Donor> Offspring> Practicality> Cost[VOL. 12.1:195SYMPOSIUM INTRODUCTION> LogisticsMental Health/Psychosocial Issues> Offspring> Donors> Donors' offspring> RecipientsEthical IssuesA. Expectations - (Autonomy/Justice)> Donors> Recipients> Medical professionalsB. Obligations of and Obligations to - (Beneficence/Justice)> Offspring> Donors> Donors' offspring> Medical ProfessionalsRecipientsLegal ConsiderationsA. Privacy/Confidentiality> AccessInformation AvailableInformation DisclosureB. Other Constitutional Law Issuesa. Procreative Libertyb. Right to care, control and upbringing of childC. Type of Liability of impacted party(ies) Responsibleparty(ies)a. RE/Fertility Centerb. Donor Agencyc. Sperm Bankd. OtherLogistics ConsiderationsA. Information System> Privacy protections> Design) Hosting party(ies)B. CostC. UniformityD. Administration> Data collection> Maintenance2009]DEPAUL JOURNAL OF HEALTH CARE LAWDisclosureThis one day symposium touched on most if not all of theseissues, and as the day came to a close, it became clear that mostspeakers were in agreement that the first question of this outline shouldbe answered in the affirmative -- a voluntary registry is very important.The reasons such a registry is significant are manifold, includingmedical considerations for donors, donor's children, offspring, andoffspring's children; psychological considerations; ethical concernsand, even political motivation in the sense that self regulation may bemore effective and efficient than reactive legislation. Creation of aregistry would enable the industry, long shrouded in secrecy to becomemore transparent and more accountable which may ultimately lead toeradication of the stigma so long associated with gamete donation.Another reason for the importance of a registry is akin to manyother kinds of registries that exist in the public health sphere such astumor registries or other disease specific registries. A registry couldpromote progress, quality assurance, and protection ofpatient/participant safety, through surveillance and empirical research,two areas currently lacking in ART.Participants made it clear, though, that if any registry were toexist the flow of information maintained would need to multi-directional. Thus, a registry would encompass more than justinformation flow to offspring. Information might flow between medicalcenters, from offspring to donors, etc. From an ethical perspective, thisis one means of fairly distributing the benefits and the burdens andattempting to balance the autonomy of all stakeholders.Another factor raised for consideration was the flexibility andfluidity of the structure and implementation of a registry. As thetechnology changes, so too do the issues that must be considered andthe information that is available. For example, the ability to freeze andbank eggs as we currently do sperm, looms on the horizon,' 1 how orshould this impact any existing registry? How does the function of aregistry change if the time comes and we all carry genetic identificationcards? These are only some of the future considerations that must betaken into account in developing a registry that will be functional overtime.11 See, e.g., Chang, Ching Chien, "Two Successful Pregnancies Obtained FollowingOocyte Vitrification and Embryo Re-Vitrification," 16 Reproductive BioMedicineOnline 346-349 (January 2008).[VOL. 12.1:195SYMPOSIUMINTRODUCTIONWhat became most obvious during the course of the day,however, is that this is a tremendously complex issue, but itscomplexity is no reason to avoid or ignore it. The mere free flow ofinformation and discussion throughout the symposium suggested that avoluntary registry is more likely to expand rather than limit the optionsof all whose live may be impacted by gamete donation. Even moresignificant was the recognition that development of a registry is notsynonymous with eliminating anonymity in gamete donation. Thecollection, storage and dissemination of information does notnecessitate revelation of identities unless all participants involved agreeto such openness. The decision of when, what, how and to whom todisclose information of such a personal nature is highly personal and tosome may be tantamount to a secret, but that does not and should notequate with negativity so often attributed to the word "secret." EthicistSissela Bok captures the essence of this when she writes: "While alldeception requires secrecy, all secrecy is not meant to deceive." 1212 Sissela Bok, Secrets: On the Ethics of Concealment and Revelation, Pantheon1982.2009]DEPAUL JOURNAL OF HEALTH CARE LAW [VOL. 12.1:195

The Future is Now: A Voluntary Gamete Donor Registry is Feasible

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The Future is Now: A Voluntary Gamete Donor Registry is Feasible

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