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Why There is No Right to Know One’s Genetic Origins

  • Heather Draper

Abstract

In June 2004, the Human Fertilisation and Embryology Act 1990 was modified to lift gamete donor anonymity from April 2005. This change also includes embryo donation and egg-share arrangements. The UK is not the only country to remove donor anonymity. Sweden changed its law in 1985, Austria and New Zealand in 1992, Victoria (Australia) in 1995 and The Netherlands in 20001. Pressure for change seems to come from several quarters. Family law in the UK, even prior to the introduction of the Human Rights Act 1998, had been moving towards the view that children’s welfare interests include knowledge of their genetic origins (Wallbank 2004). The announcement by the Department of Health Minister Melanie Johnson, reinforces this notion and suggests others:

Donor-conceived people have a right to information about their genetic origins that is currently denied them, including the identity of their donor … donor people should not be treated so differently from adopted people … The interests of the child are paramount. We live in an age where … our genetic background will become increasingly important … information about their genetic origins … is rightly theirs.2

Keywords

Genetic Origin Human Reproduction Genetic Connectedness Gamete Donation Birth Mother 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

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Notes

  1. 1.
    See L. Frith (2001) ‘Ethical and Legal Debate’, Human Reproduction 16(5), pp. 818–24.CrossRefGoogle Scholar
  2. 4.
    For example, D. Benatar (1999) ‘The Unbearable Lightness of Bringing into Being’, Journal of Applied Philosophy 16, pp. 173–80CrossRefGoogle Scholar
  3. 4.
    J. L. Nelson (1991) ‘Parental Responsibilities and the Ethics of Surrogacy: a Causal Perspective’, Public Affairs Quarterly, 5, pp. 49–61.Google Scholar
  4. 5.
    For example, T. Bayne (2003) ‘Gamete Donation and Parental Responsibility’, Journal of Applied Philosophy, 20, pp. 77–87 G. Fuscaldo (forthcoming) ‘Genetic Ties: Are They Morally Binding?’, Bioethics; H. Draper (submitted) ‘Fatherhood, Responsibility and Genetics: Disentangling Genetic Relatedness and Paternal Responsibility’, Journal of Medical Ethics.CrossRefGoogle Scholar
  5. 8.
    A. McWinnie (2001) ‘Gamete Donation and Anonymity’, Human Reproduction 16(5), pp. 807–17.Google Scholar
  6. 10.
    Lalos et al. (2003) ‘Recruitment and Motivation of Semen Providers in Sweden’, Human Reproduction 18: 212–16CrossRefGoogle Scholar
  7. 10.
    E. Blyth (2002) ‘Information on Genetic Origins in Donor-assisted Conception: Is Knowing Who You Are a Human Rights Issue?’ Human Fertility, 5, pp. 185–92.CrossRefGoogle Scholar
  8. 11.
    J. Robinson et al. (1991) ‘Attitudes of Donors and Recipients to Gamete Donation’, Human Reproduction, 6, pp. 307–9Google Scholar
  9. 11.
    C. Gottlieb et al. (2000) ‘Disclosure of DI to the Child’, Human Reproduction, 15, pp. 2052–6CrossRefGoogle Scholar
  10. 11.
    S. Klock et al. (1996) ‘A Comparison of Single and Married Recipients of DI’, Human Reproduction, 11, pp. 2554–7CrossRefGoogle Scholar
  11. 11.
    R. Cook, S. Golombok, A. Bish and C. Murray (1995) ‘Keeping Secrets: A Controlled Study of Parental Attitudes towards Telling about Donor Insemination’, American Journal of Orthopsychiatry, 65, pp. 549–59CrossRefGoogle Scholar
  12. 11.
    A. Brewaeys et al. (1993) ‘Children from Anonymous Donors: An Inquiry into Heterosexual and Homosexual Parents’ Attitudes’, Journal of Psychosomatic. Obstetrics. & Gynaecology, 14, pp. 23–35Google Scholar
  13. 11.
    A. Brewaeys et al. (1997) ‘DI: Child Development and Family Functioning in Lesbian Mother Families’, Human Reproduction, 12, pp. 1349–59CrossRefGoogle Scholar
  14. 11.
    V. Soderstorm-Antilla et al. (1998) ‘Embryo Donation: Outcome and Attitudes among Embryo Donors and Recipients’, Human Reproduction, 16, pp. 1120–8.CrossRefGoogle Scholar
  15. 12.
    A. Clamar (1989) ‘Psychological Implications of the Anonymous Pregnancy’, in J. Offerman-Zuckerberg (ed.), Families in Transition: A New Frontier (New York: Plenum Press), pp. 111–20Google Scholar
  16. 12.
    R. Snowden, (1993) ‘Sharing Information about DI in the UK’, Politics and the Life Sciences, 12, pp. 194–5Google Scholar
  17. 12.
    K. Daniels and K. Taylor (1993) ‘Secrecy and Openness in Donor Insemination’, Politics and the Life Sciences, 12, pp. 155–70Google Scholar
  18. 20.
    Donor Conception Support Group of Australia Inc. (1997) Let the Offspring Speak: Discussions on Donor Conception (Georges Hall, NSW: Donor Conception Support Group).Google Scholar
  19. 13.
    C. Turner (1993) ‘A Call for Openness in Donor Insemination’, Politics and the Life Sciences, 12, pp. 197–9Google Scholar
  20. 13.
    S. Golombok (1998) ‘New Families, Old Values: Considerations Regarding the Welfare of the Child’, Human Reproduction, 13, pp. 2342–7CrossRefGoogle Scholar
  21. 13.
    K. Vanfraussen, I. Ponjaert-Kristoffersen, and A. Brewaeys (2001) ‘An Attempt to Reconstruct Children’s Donor Concept: a Comparison between Children’s and Lesbian Parents’ Attitudes towards Donor Anonymity’, Human Reproduction, 16, pp. 2019–25.CrossRefGoogle Scholar
  22. 14.
    L. Frith (2001) ‘Beneath the Rhetoric: the Role of Rights in the Practice of non-Anonymous Gamete Donation’, Bioethics, 15(5), pp. 473–84.CrossRefGoogle Scholar
  23. 15.
    K. O’Donovan (1991) ‘“What shall we tell the children?” Reflections on Children’s Perspectives and the Reproductive Revolution’, in R. L. Lee and D. Morgan (eds.), Birthrights: Law and Ethics at the Beginnings of Life (London: Routledge), pp. 96–114.Google Scholar
  24. 22.
    Only 46 gave locating a genetic parent or relative as the primary reason. O’Donovan, citing C. Day (1979) ‘Access to Birth Records’, Adoption and Fostering, 3(4), p. 17.CrossRefGoogle Scholar
  25. 23.
    D. Thowe and J. Feast (2000) Adoption, Search and Reunion: the Long-term Experience of Adopted Adults (London: The Children’s Society).Google Scholar
  26. 30.
    For an introduction to duty of rescue, see T. Beauchamp and J. Childress (1994) Principles of Biomedical Ethics (Oxford: Oxford University Press), pp. 266–8.Google Scholar
  27. 31.
    We should be arguably less concerned about information per se about us being in the public domain when the information about us is stripped of anything that could lead us to be identified. The distinction between anonymous and identifiable participants is, for instance, is used to support epidemiological research and is an interpretation that seems to be supported by the Data Protection Act 1998. See also W. Rogers and H. Draper (2003) ‘The Ethics of Confidentiality in Medical Ethics’, Journal of Medical Ethics, 29, pp. 220–4CrossRefGoogle Scholar
  28. 31.
    H. Draper and W. Rogers (2005) ‘Re-evaluating Confidentiality: Using Patient Information in Teaching and Publications’, Advances in Psychiatric Treatment 11: 115–24.CrossRefGoogle Scholar

Copyright information

© Heather Draper 2005

Authors and Affiliations

  • Heather Draper

There are no affiliations available

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