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US bioethics panel urges privacy protection in new era of genome sequencing

15 October 2012
Appeared in BioNews 677

Whole genome sequencing is getting faster and cheaper but the healthcare benefits this data promises must be balanced by policies that protect patient privacy, says a report by the President's Commission of Bioethics in the USA.

Dr Amy Gutmann, who chairs the Commission, says that 'it is not a fantasy' to imagine a time in the future where genomic data could be used in 'really detrimental' ways. Nonetheless, she says, whole genome sequencing holds 'enormous promise for human health and medicine'.

The malicious use of genomic data was a particular concern after Dr Gutmann and colleagues found that in half of US states, it is entirely legal for someone 'to pick up your discarded coffee cup and send it for [DNA] testing', without your knowledge.

With private companies offering to test anything from gum to toothpicks and tampons, the Commission examined fears that such secretly obtained data could be used detrimentally, for example by suggesting increased risk of mental illness 'as evidence of unfitness to parent' in a nasty custody battle.

In the UK, genomic sequencing without informed consent has been prohibited since 2006. The UK was the first country to pass legislation of this kind and the Commission's report recommends that the USA follow suit.

However, as the UK Government looks to establish the Clinical Practice Research Datalink, allowing access to anonymised patient data throughout the NHS, other issues cited by the Commission may be relevant in the UK. For example, the Commission recommends improving the safety and accessibility of online genomic data storage.

Without public trust in a system to provide 'appropriate confidentiality', warns Dr Gutmann, patients may be unwilling to share arguably their 'most intimate information' for scientific research.

Further recommendations in the report include improving informed consent for patients enrolling in research studies, particularly with regard to access to so called 'incidental data'. This is where genome sequencing carried out to investigate genes linked to heart disease, for example, may reveal that a person has a high risk of developing Alzheimer's disease. Whether this data should be available to research participants was 'an unsettled issue', according to the Commission, which instead recommends only that people be aware of the existence and availability of this information.

The measures would be an improvement but do not go far enough, says Jeremy Gruber, president of the Council for Responsible Genetics, an US non-governmental organisation. 'What will inevitably happen is whole genome sequencing will enter greater use and we won't have proper regulations to ensure privacy', he says.

The full 150-page report, 'Privacy and progress in the era of whole genome sequencing', is available at

Bioethics panel urges more gene privacy protection
CBS News |  11 October 2012
Citing privacy concerns, US panel urges end to secret DNA testing
Reuters |  11 October 2012
President's Bioethics Commission Releases Report on Genomics and Privacy
Presidential Commission for the Study of Bioethical Issues (press release) |  11 October 2012
President's Ethics Panel Urges New Protections for Whole Genome Data
ScienceInsider |  11 October 2012
US ethics panel reports on DNA sequencing and privacy
Nature News Blog |  11 October 2012
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