More on the DNA home-testing moral maze

13 August 2010 by Adam Wagner

DNA home-testing is likely to be an increasingly high-profile and controversial issue in the coming years, both from a moral and legal perspective.

I posted last week on the moral maze which surrounds DNA home testing, in light of new guidance for direct-to-consumer genetic tests published by the Human Genetics Commission.

The guidance has been greeted with mixed reactions. GeneWatch UK, a not-for-profit organisation which investigates how genetic science and technologies impact on society, have condemned the guidelines, lamenting that there will be “no independent scrutiny of companies’ performance or the claims they make about people’s risk of developing diseases in the future” . The focus of their criticisms are that the HGC represents the interests of the genetic testing companies over those of the general public.

On the other hand, today’s Economist supports the light-touch regulation of the industry, in the interests of scientific and medical progress. It says in an editorial that existing fraud laws should be able to deal adequately with snake-oil DNA companies, and that:

Instead, then, of reacting in a hostile fashion to the trend for people to take genetic tests, governments should be asking themselves how they can make best use of this new source of information. Restricting access to tests that inform people about bad reactions to drugs could do harm. The real question is not who controls access, but how to minimise the risks and maximise the rewards of a useful revolution.

This week’s Economist also has an interesting feature on the personal genetic-testing industry, focusing on recent government hearings in the US on the issue, which are more likely to lead to a squeeze rather than a ban. The article highlights the stunning reduction in costs (from $100 per base pair to under 1/100,000 of a cent) of DNA sequencing in the past two decades, as well as the fact that soon a consumer will be able to have their entire genome sequenced rather than just a few genes.

It is also interesting that home-testing may have powerful foes. Pharmacogenomics, which could test the likely response of patients to particular drugs,  may result in fewer people needing to take preventative drugs, meaning smaller profits for pharmaceutical companies.

It is probably right that freedom of information in relation to one’s own genetic code should trump the protection of vulnerable groups such as children, at least to the extent of supporting rather than stymying the still young DNA home-testing industry. Of course, as with all medical products, a careful eye will have to be kept on companies providing the products and in particular the promises they are making to consumers. But, as the Economist points out, the potential medical advances, as well as the power such tests can place in the hands of the consumer, greatly weakens the argument for control being placed in the hands of doctors, or for a full ban.

Read more:

• DNA, home testing and fuzzy human rights
• Feature | DNA Database: another key human rights election issue
• 12 Aug | Fallible DNA evidence can mean prison or freedom – New Scientist

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