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Nuffield Council on Bioethics Call for Evidence: Disclosure and Donor Conception

16 April 2012
By Dr John Appleby and Dr Lucy Blake
John B. Appleby and Dr Lucy Blake work at Centre for Family Research, University of Cambridge
Appeared in BioNews 652
The Nuffield Council on Bioethics has launched an inquiry (1) on the ethics of disclosure in families with children conceived using donated reproductive tissue (i.e. eggs, sperm, or embryos). In spring 2013 the Council will publish a report on its findings, making policy recommendations where appropriate. This call for evidence is part of a long history of debate on the topic of disclosure in the UK and runs parallel to international debates in the USA, Canada (reported in BioNews 645), Australia (reported in BioNews 651), and Europe.

Even though the consultation has only just begun, we'd like to take this opportunity to consider some of the issues (some more obvious than others) that may arise in the responses.

We think it's likely that this call for evidence will expose the fact there is still a great deal of empirical research left to do, particularly in the case of embryo donation and surrogacy families. There is also little known about how donor offspring who have been aware of their donor conception from a young age will feel about their donor origins in adolescence and beyond.

Nuffield has the difficult task of working with a body of evidence which, for the most part, only extends across part of the lives of donor conceived individuals. Surprisingly, this detail is often overlooked in ethical discussions.

Of the ethics literature that is available and relevant to this consultation, only a limited sample draws on up-to-date empirical research. Therefore, one of the most prominent challenges for the Council will be conducting a sensitive ethical analysis of the available empirical evidence.

Indeed, the task of bridging the gap between ethical theory and empirical evidence, as many bioethicists will attest, is easier said than done. The difficulty in aligning the two is compounded by the fact that little of the empirical evidence clearly and consistently describes the participant's moral and ethical claims. Some participants are very descriptive when discussing how they have been either morally wronged or benefitted as a result of disclosure, but often the ethical content of their testimony is obscure or needs sensitive interpretation.

Therefore, articulating ethical perspectives on disclosure will be a complex task, but one that has the potential to move this debate forward. In particular, this will be useful in dealing with the issue of how children's welfare should be prioritised - and the different ways we can conceptualise the welfare of the child.

The Council will likely find that the available empirical and ethical literature is comprised of many international points of view. However, normative attitudes towards disclosure change across borders, just as they have changed across time. It will be necessary for the Council to keep in mind that the evidence of the ethics of disclosure may very well be relative to whichever country or countries each empirical study was conducted in.

Finally, one of the most overlooked aspects of any debate on disclosure is the ethical importance of how challenging disclosure may be for parents. Evidence about how parents ethically cope with their disclosure decisions is something of considerable value to this consultation.

It would also be helpful for the working party to articulate the kinds of support services that would help families (this is addressed in question 11). The Council should consider what kinds of challenges or difficulties might stand in the way of any parent, counsellor or doctor trying to enact the best practice prescriptive measures relating to disclosure. Keeping the above considerations in mind might help ensure that Nuffield's ethical investigation delivers recommendations of practical significance.

Usually, ethical debates on disclosure are plagued by having too little evidence, not too much. But, this call for evidence will undoubtedly benefit from a rich and varied audience of responders, be they academics, physicians, counsellors, or donor-conceived families themselves (both those who conceived prior to the 2005 change in the law and after).

The Council has set out on a challenging task which will hopefully result in a comprehensive, sensitive report which will be of use for policy makers, professionals and those interested in the ethics of disclosure, both in the UK and internationally.

SOURCES & REFERENCES
1) Donor conception: ethical aspects of information disclosure
Nuffield Council on Bioethics |  18 October 2019
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