September 28, 2022

Protecting the public against shonky genetic tests

A burgeoning field raises serious questions

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



Michael Cook
genetic testing
personalized medicine