Would you trust your employer’s or health insurer’s wellness vendor with information that you or your children might have certain traits or might get some diseases in the future?
That is a new component of a workplace wellness program offered by health insurer Aetna with a wellness vendor Newtopia. The Genetic Privacy Network published an article describing the program. In addition to collecting detailed health and lifestyle information via health risk assessment questionnaires and biometric screenings, employers who adopt this program ask employees to have a genetic test to determine if they are prone to obesity. The test looks at genetic markers for the way the body processes carbohydrates or fats and a genetic marker tied to compulsive eating. Based on the result of genetic testing, employees are offered coaching on lifestyle and exercise.
It is not clear how much value employees would get from having such testing. The article quotes at least one expert who believes that genetics explain little about obesity, so genetic testing is not useful in dealing with it. Nevertheless, if employees can be “engaged” to participate in this program through financial incentives or some other technique, Newtopia will have a great way to collect (and monetize) large quantities of health, lifestyle and genetic data.
Collection of genetic data poses significant privacy risks because it includes information about an individual and about the individual’s family. When we talk about genetic testing, we need to talk about two components: the genetic profile or set of genetic test results, and the sample of blood, saliva or other cells that contain the genetic information. Let us look at each in turn.
Genetic data can show physical characteristics and predispositions to disease for the person being tested as well as for that person's family. This raises privacy and ethical issues because the predictive power of genetic data touches not only the individual who decides to get tested but others in the family. Not everyone wants to know what their future might hold. Some people prefer not to know that they have a marker for a disease that they may never get or that has no treatment or cure. Genetic testing needs to be designed in a way that can provide information to family members who want to know the results while allowing others to exercise their "right not to know." A different aspect of this issue is whether those who perform genetic testing have an affirmative obligation to notify people or their families when they discover a predisposition to a disease that can be treated or prevented.
The preservation and retention of blood, saliva or tissue samples presents its own privacy concerns. Test labs that have the samples can re-analyze them not only to repeat the original tests, but for any other information contained in the samples. This can be particularly tempting as genetic science advances, new links are found between genes and disease, and new testing methods become available. Medical ethicists debate whether additional analysis requires express consent. Some say that the benefits of new discoveries should outweigh individual control. Others point out that people are reluctant to share their genetic information precisely because they are concerned about the uses to which the information might be put. Someone willing to have a test related to obesity (whether or not the test has medical validity) may not be willing to allow the use of her genetic information for other purposes, even in de-identified form.
A few years ago there was an interesting case in Arizona. Researchers from Arizona State University collected DNA from the Havasupai Indian tribe to look for a genetic cause of diabetes among the tribe's members. No genetic link was found. Tribe members later learned that researchers also tested the samples for other genetic information and used them in other studies. The researchers studied mental illness and inbreeding, which deeply offended the tribe. One researcher performed a study of population migration patterns, which challenged the tribe's sacred creation stories. Researchers claimed that the broad consent they received at the time of sample collection permitted the use of the data for other studies. The tribe contended that had it known that this is how their samples might be used, it would have never allowed the samples to be collected. After spending $1.7 million to fight a lawsuit by the Havasupai, Arizona State University settled the case by paying $700,000 and returning the samples to the tribe.
Besides, researchers can no longer guarantee anonymity to participants in genetic research. Two years ago the journal Nature published a paper showing that subjects can be reidentified from supposedly anonymous DNA data. With more data and better software, reidentification has only become easier since then. There is also the question whether those who have and use the samples will comply with the stated privacy limits.
We need to question the voluntariness of participation in wellness programs, the value of the testing being offered, and the appropriateness of wellness vendors exploiting the information they collect. This is even more important when genetic information is involved.