Consumer Genetics

There is a good letter in "Nature", 26.8.2010 by Christopher Kanan, discussing consumer genetics:

Consumers have a right to affordable genetic testing

There is no good reason for people to have access to their personal genetic information only through medical experts, as Arthur Beaudet suggests (Nature 466, 816–817; 2010). Such tests provide an incentive for consumers to learn about genetics and to support genetics research, while encouraging them to make reasonably informed decisions about their health.

Consumers have a right to acquire affordable information about their genetic profile. Independent studies could verify the quality of the data gathered, and this could easily be done by product-review organizations such as the US-based Consumers Union.

Regulating the quality of data interpretation would be harder, especially because data-inference models improve over time. Companies should explain that their models for interpreting genetic material are probabilistic and imperfect. They should also reference the studies used to generate these models and allow users to download the uninterpreted data.

Some companies warn consumers that they should not change their lifestyle if they learn they have a higher risk of a disease. But if a test indicates that a person's risk of developing heart disease is above average, they may exercise more and eat better. Is this any worse than changing your behaviour because your father died of heart disease?

Beaudet suggests that ancestry tests may be acceptable with limited regulation, but that using the same genetic material to infer health-related information should have medical approval. Why should one type of genetic test be acceptable and the other not? Consumers may make life-altering decisions based on that information in both cases, but the fear that this information will harm them is speculative.

Because some genetic tests may have to compete with less expensive, direct-to-consumer products, people calling for a ban on such tests should declare any competing financial interests.

Caution is recommended - but basically the information about his own genetic heritage should be free for everyone and should be given without much paternalism.