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Should the results of individual genetic studies be disclosed to participants?

14 June 2010
Appeared in BioNews 562

Researchers shouldn't feel obliged to disclose genetic information about study participants, a global survey of genetic researchers has found.

Disclosing people's results without properly explaining their significance could lead to misunderstandings, according to Dr Robin Hayeems, lead survey author and a researcher into the genetics of cystic fibrosis (CF) at the University of Toronto.

This view is controversial since many ethicists believe it is a researcher's absolute obligation to disclose personal genetic information, Dr Hayeems will say today at the annual conference of the European Society of Human Genetics in Sweden.

Dr Hayeems and Professor Fiona Miller, who works on the genetics of autism at the University of Toronto, surveyed 342 geneticists studying CF and autism.

'We were interested in their perspectives about sharing genetic research results with individual study participants in order to be able to add their voices to the ongoing debate about whether and under what circumstances researchers are under an obligation to report these results to research participants', said Dr Hayeems.

The survey found 80 per cent of the researchers believed people should be informed if a study identified a clinically-significant genetic variation. But they found it hard to define what was 'clinically significant', particularly when the variation was unrelated to the study.

The researchers were also 40 per cent less likely to disclose individual results if they couldn't give necessary medical advice. Clinician researchers were 1.5 times more likely to disclose such findings than non-clinician researchers.

Dr Hayeems concluded that: 'Most, but not all, ethicists endorse an obligation to report genetic research results about individuals because they consider it to be clinically relevant information that individuals have a right to receive. This argument presumes that these research results constitute such information, and that the judgment of clinical significance is relatively straightforward. Our work suggests that this presumption may be misplaced'.

The team - from the Genomics and its Ethical, Economic, Environmental, Legal and Social Aspects (GE3LS) branch of a Genome Canada funded project - hope the survey will generate further debate on the ethics of genetic disclosure among researchers.

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A leading medical ethicist has argued that the results of genetic tests should be made available to insurers. Professor Soren Holm, from Cardiff Law School, says that the availability of such genetic information is in principle no different to other types of medical data already made available...
2 February 2004 - by BioNews 
UK insurance companies should have access to genetic test results so they can set fair insurance premiums, according to an article published in the Lancet medical journal last week. Nick Raithatha and Richard Smith, both health economists at the University of East Anglia in Norwich, UK, argue that information from...
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