Information access and donated gametes: how much do we know about who wants to know?

Abstract

This paper reviews the methodological adequacy of the psychosocial literature on information access when donated gametes and embryos are used. In all, 10 major flaws were identified: (i) sample sizes were too small, (ii) sample selection procedures were ad hoc, (iii) there were no comparisons between current and past donors and recipients, (iv) there were no comparisons between current donors and recipients in the one study, (v) studies relied on just one partner from a recipient couple, (vi) donor motivation was assessed crudely, (vii) studies failed to clarify what was identifying and non-identifying information, (viii) links between researchers and clinics may have influenced respondents, (ix) response measurement was crude, and (x) data analysis was limited and basic. It is argued that these flaws prohibit any firm conclusions to be drawn either way about whether donors and recipients should disclose information, whether they should have access to information, or even whether donors and recipients want to have access to information about each other or to have information about themselves disclosed to the other party.

Parents' knowledge about the donors and their attitudes toward disclosure in oocyte donation

“…Future studies should focus on longitudinal designs that could increase the response rate and provide a picture of the change in disclosure attitudes over time. A strength of this study was the use of ®ve geographically diverse programmes to recruit subjects instead of the reliance on one clinic for subjects (Broderick and Walker, 1995). Additionally, obtaining information from both husbands and wives provides a more thorough picture of the oocyte donation experience than reliance on the mothers' experience alone.…”

“…Additionally, as Broderick and Walker (1995) have pointed out, previous studies have been limited by small sample size and reliance on only one programme for subject recruitment.…”

Information on genetic origins in donor-assisted conception: Is knowing who you are a human rights issue?

“…Although Triseliotis (2000, p. 84), among others, has suggested that disclosure of information about genetic origins should 'not have been a scientific but a moral issue', there is, nevertheless, a demand for empirical 'evidence' to justify the claims of donor-conceived people (for examples, see Broderick and Walker, 1995;Shenfield and Steele, 1997).…”

Donor Gametes and Embryos: Who Wants to Know What about Whom, and Why?

“…Durna et al (1997) in Australia also report that in the face of extensive pretreatment counselling, particularly about telling children of their origin, the attitudes of parents remain relatively unchanged-they choose not to disclose to their children. Leiblum and Aviv (1997) conclude that mental health professionals should be aware of the divergence between what they believe about the positive benefits of counselling and disclosure, the fact that the majority of infertile couples are not interested in counselling for disclosure and do not believe that disclosure would be helpful to either their children or themselves, and the fact that almost nothing is known about the benefits of disclosure among all parties involved (Broderick and Walker, 1995;Shenfield and Steele, 1997;Walker and Broderick, 1999).…”