'The Donor-Linking Practices of Australian Fertility Clinics' by Fiona Kelly, Deborah Dempsey and Charlotte Frew in (2019) 27
Journal of Law and Medicine 355
comments
While Australia is a world leader in providing statutory donor-linking services – the practice whereby individuals connected through donor conception seek access to information about each other – there has been only limited exploration of how fertility clinics respond when approached with donor-linking requests. This article reports on 19 qualitative interviews conducted with Australian fertility clinic staff that explored how clinics manage requests to share identifying and non-identifying information about parties involved in donor conception. Our findings indicate that fertility clinics have experienced an increase in donor-linking requests in recent years, but that they are typically dealt with on an ad hoc basis. Two approaches to donor linking were identified: (1) an "active" approach where clinics supported donor linking and were willing to engage in outreach to see if the other party was open to information exchange; and (2) a "passive" approach whereby clinics were reluctant to facilitate linking and were unwilling to outreach to other parties. The variety of responses to donor-linking requests highlight the ways in which donor-conceived adults, parents and donors can have dramatically different access to information, depending on the clinic that provided treatment.
The authors state
Donor linking is the practice whereby individuals connected through donor conception – donor-conceived children and adults, recipient parents and donors – seek access to identifying and non-identifying information about each other. It can be achieved through statutory registers (where they exist and the applicant meets certain eligibility requirements), inquiries made to fertility clinics or sperm banks, direct-to-consumer DNA testing, non-statutory online voluntary registers, or social media searches using information contained in a donor profile. While it is difficult to gauge exactly how many people are participating in donor linking, the advent of linking legislation in a growing number of jurisdictions and the rise in informal linking as documented in the media, suggest it is increasing in popularity.
While Australia is a world leader in providing statutory donor-linking services to the donor conception community, little is known about how the practice is managed within the fertility industry. In particular, there has been only limited exploration of how fertility clinics respond when approached with donor-linking requests. Given that clinics are often the first place someone might turn when trying to locate donor relatives, particularly in States without donor-linking legislation, knowing what clinics do when donor-linking inquiries are made is important to understanding the complex landscape of donor linking in Australia.
A small body of research has begun to emerge on the use of Australia's statutory donor-linking registers. This literature indicates that use of the registers is growing across all applicant groups (donor-conceived adults, donors and recipient parents). At the same time, it is impossible to know what percentage of eligible applicants apply as we have no record of the total number of donor conception births in Australia, and many donor-conceived people do not know they are donor conceived. Early research also suggests that applications for information frequently lead to face-to-face contact between donor relatives. However, statutory registers are only available in three States and many donor-conceived people do not fall within the ambit of the legislation because they were conceived before it came into force, are not yet old enough to apply, or are not aware of the existence of the registers. In situations where there is no State register, or where the potential applicant does not meet the eligibility criteria, they are likely to turn to the fertility clinic (or treating hospital) when looking for information about donor relatives. Since 2005, the National Health and Medical Research Council, Ethical Guidelines on the Use of Assisted Reproductive Technology in Clinical Practice and Research (the NHMRC Guidelines) have specified that clinics only use donors who agree to disclose identifying information about themselves to any resultant offspring, and clinics have been required to record all relevant information about parties involved in donor conception programs. Where the State has a statutory register, clinics are obliged to provide the information to the register. In States without a register, it is the responsibility of the clinic to maintain the records. Many Australian clinics also have pre-2005 records, though there are some instances of records being lost or destroyed, or difficult to locate or understand. Where pre-2005 records exist, the NHMRC Guidelines require that they be preserved by clinics.
While clinics are the natural starting point for many people looking for information about their donor relatives, little is known about this type of linking. The small body of research that has emerged has focused on the experiences of individuals who have requested information from a clinic. Virtually nothing is known about clinic-based linking from the perspective of clinics. To fill this information gap, we conducted 19 qualitative interviews with fertility clinic staff across seven Australian States and Territories to explore policies, practices and processes regarding the management and sharing of identifying and non-identifying information about parties involved in donor conception. Clinic staff were asked about the frequency and nature of donor-linking requests, how they responded to them, the challenges and impediments to donor linking in the clinic setting, and how they are preparing for donor linking in the future. Our findings indicate that clinics have experienced an increase in donor-linking requests in recent years, but that they are largely dealt with on an ad hoc and often inconsistent basis. Two approaches to donor linking were identified among the clinics: (1) an "active" approach, meaning that clinics were open to facilitating donor linking and were willing to engage in outreach to see if the other party was open to information exchange; and (2) a "passive" approach whereby clinics were reluctant to facilitate linking and were unwilling to outreach to other parties to ask if they were open to contact. The variety of responses by fertility clinic staff to donor-linking requests highlight the ways in which donor-conceived adults, recipient parents or donors can have dramatically different access to information, depending on the clinic that provided treatment.
