October
28
  1:27:55 PM

Protecting the public against shonky genetic tests

Concern is growing about companies over-selling the results of genetic tests. This week’s issue of The Lancet lists a number of serious concerns which were highlighted back in July by a report from the US General Accounting Office. The GAO sent genetic material from fictitious consumers to several direct-to-consumer genetic testing companies and analysed the results. They were damning: the test results were “misleading and of little or no practical use”. (The GAO’s video above contains clips of conversations with sales persons.)

More recently the London-based Nuffield Council on Bioethics questioned whether it was appropriate to frame “a view of health as a kind of consumption good, and hence of health products and services as commodities.” The Council also claimed that the tests were being used  “not merely to respond to consumer demand, but also to reshape such demand to create and sustain a market”.

Other governments are also worried. Earlier this year, Germany passed a law requiring “predictive genetic examinations to be conducted or commissioned only by doctors who specialize in human genetics, or by other similarly qualified and specialized medical doctors”.

The Lancet summarises some of the objections:

  • Tests for trivial traits like male pattern baldness are being packaged together with tests for serious ailments like Alzheimer’s disease.
  • Consumers cannot understand the implications of the test results and may become unappropriately complacent or anxious.
  • Genetic counselling is often quite inadequate.
  • Some companies were willing to do surreptitious testing – without informed consent – which is unethical and even illegal.
  • There is no provision for the disposal of private genetic information if the testing company is acquired by another firm.

But the debate over genetic testing will not go away in an era of personalised medicine. Consumers have become convinced that the future of their health can be read in their genes. Erynn Gordon, a genetic counsellor interviewed by The Lancet, urged caution. “It's not ethical to market genetic testing directly to consumers when the science behind the risk assessment varies.” ~ However, she says, “the question that raises is, who decides when the science is mature enough?” ~ The Lancet, Oct 23




 

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