Should We Let the Gene Out of the Bottle

How much do you know about your genes? Does your genetic profile match that of a sprinter, or is it more like an endurance athlete? Are you lactose intolerant, malaria resistant, possessed of wet or dry ear wax or at an increased risk, compared to others with similar ancestry, of breast cancer, Crohn’s or Parkinson’s disease?

Welcome to the new world of retail genomic testing, where all you need to find out is an internet connection, some spit and at least $500USD.

Proponents of retail genetic testing are set to make a packet, though they claim that their desire to make the world a better place is what truly makes them tick. The founder of 23andMe, for instance, insists that giving us access to our personal genetic information will force the medical profession to get across research evidence that points to the genetic causes of disease, improving health care for all.

The company’s website also says they are keen to “contribute to…human understanding” by handing over their genetic database-at an undisclosed cost-to assist researchers to find out more about the links between genes and disease.

They care about our social life, too, with swapping and comparing DNA profiles on sites designed for the purpose set to become the next social networking fad.

But opponents of retail genetic testing warn us to beware. They say that the information provided by retail genetic testing is crude and potentially misleading. Some companies are “harvesting” research data before it is ripe, telling us that we have a risk of a disease on the basis of one gene, for example, when far more are likely to be required.

Some are also worried about testing for conditions where no medical or life-style fix is available. Why know what you can’t do anything about, especially when you are obliged to disclose the information to your medical insurer, who could increase your premiums or refuse to insure you because of it? They also fret quality control, believing that any profit-making entity in the business of telling people that Alzheimer’s disease may be in their future needs to get it right.

Some objections to retail DNA testing are offensively paternalistic. The claim that the information might frighten us smacks of the excuses doctors used to give for refusing to tell patients they had cancer, while the assertion that most of us won’t change our behaviour because of what we learn says nothing about what any particular individual might do. In any case, whether we want to act on the information or just know it is our concern.

Clearly some regulation is required. 23andMe gives clients their research reports in the context of a rating system that enables consumers to easily grasp how much evidence is behind the results and so how much weight should be given to them. This sort of system should be standardized, rigorous and mandatory for all retail DNA companies. We must also be able to trust that the information given to us is accurate and conforms to all commonly accepted ethical standards, including those relating to informed consent and privacy. I could even live with being forced to have my results sent to my GP, and to have to make an appointment to pick them up.

But banning consumers from ordering the tests or only allowing tests to be done that have been proven “clinically useful” or requiring genetic counselors to interpret the results is far too restrictive, and just not fair.

Publication history

Should We Let the Gene Out of the Bottle  Sunday Sun-Herald (Sydney)
2008-12-07