Genetic Testing

The ethics side

Arthur Caplan

Emanuel & Robert Hart Professor of Bioethics, Chair, Department of Medical Ethics and Director, Center for Bioethics University of Pennsylvania, USA

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"The industry should be addressing these issues right now. Ethics is the biggest obstacle to the future success of genetic testing."

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1. Christopher McLeod, president of Connecticut-based 454 Life Sciences was quoted as saying, "It's the dawn of a new era when you can look at not just all the genes, but all the genetic information that an individual has. We're just on the cusp of making that economically feasible." Is the hype associated with Genetic-testing justified?

There is some hype. The chance of seeing any real commercially viable gene testing in doctors' office or home kits in the next two years is slim. But the future of testing is very bright. As more diseases and conditions are reliably correlated with predictive accuracy and more information is obtained about who will and will not respond well to medications this field will become huge in medicine. I think we are still five or six years away however.

2. This is a highly knowledge-dependent sector. With each company carrying out its own research, will they be ready to share their valuable knowledge? If not, how will this affect the growth of the industry?

Not much sharing likely in this highly competitive industry. I think it will mean a proliferation of tests, test kits and different testing locations. Not sure how this will all sort out but it will stand in the way of efficient testing and may undermine consumer interest if there are too many competitors with small test niches.

The information given out must be accurate and we don’t have good international standards for genetic testing.

3. What could prove to be the hurdles to the growth of the industry?

The information given out must be accurate and we don’t have good international standards for genetic testing. Nor do we have agreed upon standards for counselling consumers. There will be liability issues surrounding false negatives and positives as well as misunderstanding by consumers of complex probabilistic information. There are also issues about the need for privacy protection which is not firmly in place and the handling of 'genetic records'. The stigmatization of racial, ethnic or family groups by testing is also a danger.

4. How can the industry address issues related to Ethics and data security in the future? Is it too early to start worrying?

The industry should be addressing these issues right now. Ethics is the biggest obstacle to the future success of genetic testing.

5. Amidst all this, where do the patients/consumers stand currently and what does the future hold for them?

Patients will in the short run rely on their doctors for advice about all this, but direct to consumer advertising will begin and then it will be a free-for-all while the good drives the bad out of the marketplace.

6. Any other comments?

See my book Smart Mice Not So Smart People (Rowman Littlefield) which came out six months ago for more on genetic testing and ethics!

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