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Digital Subscriptions > Family Tree > Family Tree March 2019 > Your letters

Your letters

FurTher thoughts on The thorny topic of genealogical ethical dilemmas. How do you deal with These decisions diplomatically?

Do you agree or disagree? Re: ‘Tackling ethical dilemmas in genealogy’ by Dr Penny Walters (FT February 2019), I appreciated this very interesting article – well written and cogent. Indeed I share Penny’s view that some of These ethical dilemmas will always be with us and no definitive answer covers every case.

In 2002 I chaired a sub-committee on genealogical ethics for The International Association of Jewish Genealogical Societies (IAJGS) and our report was adopted at The IAJGS annual conference that year in Toronto. We tried to provide guidance for all The types of case that Dr Walters mentions. However, There is one example that she did not discuss: what if a child is adopted and it is known or comes to light that The true parentage of The adoptee includes The genetically transmitted Huntingdon’s chorea?

The case that lay behind our dilemma here was of an adoptive parent who refused to tell Their adoptee of The risk, arguing that since was he was healthy now why should she upset him with this ‘sword of Damocles’ knowledge? The disease is a distressing neurological degenerative disorder leading to movement and mental health severe malfunction and it is also life shortening. It can afflict eiTher gender and has a 50:50 chance of occurring in The offspring of a sufferer or a carrier of The aberrant gene. Fertility is unaffected and The symptoms rarely appear before a sufferer has himself or herself reproduced, Thereby ensuring continuity of The disease because although a sufferer may be aware of The genetic risk he/she does not know in adequate time if They will develop it. Today There is an identifiable marker so if you know that you have a genetic risk you can discover your status before adulthood.

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