What can be done with your DNA – with or without your permission?

At the heart of the controversy – and potentially many more controversies to come – is the notion of ‘informed consent’ about DNA testing. If you donate your blood, for example at a blood bank, and someone then collects a sample from that to do DNA testing; you’re neither informed nor consenting. If you donate blood and sign a release at the blood bank, which states that the blood may be used for DNA experiments (or some such thing) – your consent is clear, but how specific does that release need to be in order to be constitute ‘informed?’

The New York Times has an interesting article Indian Tribe Wins Fight to Limit Research of Its DNA about the case of the Havasupai tribe of Arizona, whose DNA was collected for the express purpose of looking for genes involved in Type II diabetes, but wound up being used for a wide variety of genetic elements. Incensed that their culture and personal mores were assaulted in this way, members of the tribe sued and were recently awarded over $700,000 plus the return of their donated blood samples.

The case represents a difficulty endemic to this kind of research. The technology is improving rapidly. Tests and experiments that were impossible only a decade ago are not only possible now, but in some cases can be performed rapidly. This includes analysis of an entire human genome. Consequently, blood samples and other sources of DNA that were taken for limited purposes a few years ago, suddenly become targets for many more kinds of tests. Some of these can be performed inconspicuously and surreptitiously; and no doubt are, only people never know this to be the case. The Havasupai found out almost by chance. A member of the tribe who was attending the Arizona State University, where the DNA testing was conducted, discovered that research involved far more areas than the originally stated purpose.

But months later, tribe members learned more about the research when a university investigation discovered two dozen published articles based on the blood samples that Dr. Markow had collected. One reported a high degree of inbreeding, a measure that can correspond with a higher susceptibility to disease.

Ms. Tilousi found that offensive. “We say if you do that, a close relative of yours will die,” she said.

Another article, suggesting that the tribe’s ancestors had crossed the frozen Bering Sea to arrive in North America, flew in the face of the tribe’s traditional stories that it had originated in the canyon and was assigned to be its guardian.

Listening to the investigators, Ms. Tilousi felt a surge of anger, she recalled. But in Supai, the initial reaction was more of hurt. Though some Havasupai knew already that their ancestors most likely came from Asia, “when people tell us, ‘No, this is not where you are from,’ and your own blood says so — it is confusing to us,” Rex Tilousi said. “It hurts the elders who have been telling these stories to our grandchildren.”

[Source: New York Times]

There are many aspects to the ownership and rights of individuals regarding their DNA. As SciTechStory covered in Surprise verdict in gene patent case in the United States (and many other countries) companies are allowed to own the patent on specific genes, genes that everyone has, which presumably gives them the right to perform DNA studies on that gene and then use the information for analysis. If you want to know about that specific gene, then you must use that company’s proprietary (read: expensive) analytic procedures. It’s the basis of their business model.

In general, courts in various parts of the world have held that DNA information gathered from an individual – blood sample, hair, epithelial cells – is subject to the individual’s rights. Especially in legal situations, as in arrest for a crime, the taking of samples for DNA must be done explicitly and often with consent, unless otherwise ordered by a court. The ‘informed’ part of it, however, is currently only loosely handled by most legal systems. Police, for example, may take DNA samples but have no clear idea what specific genetic information is going to be used – and, in fact, it may not be the same each time.

It is expected that as DNA analysis becomes increasingly sophisticated, it will become increasingly difficult not only to define and measure what ‘informed’ means, but also to simply carry out the process of informing someone.

What’s likely to happen is the creation of a large ‘gray area’ in the law, which will tend to favor the use of aggregate DNA data (say a blood bank’s entire stock) for almost any kind of DNA analysis and leave the challenges on consent and especially ‘informed’ up to the individual. This is why experts in privacy and personal rights are concerned about the abuse of DNA information collection and its use. It will be very difficult to police and adjudicate.