Sufficient Scruples

Bioethics, healthcare policy, and related issues.

May 15, 2006

We Own Your Diagnosis, and We’re Not Letting It Go

by @ 1:31 PM. Filed under Access to Healthcare, Autonomy, Biotechnology, Child-Rearing, Disability Issues, General, Healthcare Politics, Medical Science, Provider Roles, Reproductive Ethics, Research Issues, Sex, Theory

Glen McGee reports on this development in genetic diagnosis: England’s HFEA (national assisted-reproduction policy-making body) has finally agreed to authorize pre-implantation genetic diagnosis (“PIGD”) for some known cancer-linked genes (apparently BRCA1 & 2), but the genes in question are patented by a commercial corporation, Myriad, who flatly refuse to license the testing. So the regulatory barrier has been removed, but it is still illegal to perform tests which, presumably, patients want, and that could give them knowledge of a child’s predisposition to breast or ovarian cancer, because a commercial license-holder has decided unilaterally not to allow it.

I have blogged previously on the dangers of patents for ordinary genome sequences; this seems to be as stark an example as you could ask for. Basic information about people’s health status and prognosis is being withheld from them, deliberately, by an uninvolved third party acting under property rights law, of all things. Are people’s values and freedom ever going to be taken seriously in the healthcare arena?

It’s difficult to know just what’s going on here. One possibility is that Myriad objects to PIGD in general. But the company licenses commercial testing for BRCA1/2 in adults, and has been criticized in the past for aggressively promoting its own tests directly to the public with inflated promises. It doesn’t sound like a company with extensive squeamishness about the uses of technology. Another possibility is that they are attempting to develop their own embryo-focused test and simply want to monopolize the market. I can’t find any further information on their position on this issue. The company’s own Web site touts their testing services for adults, but doesn’t mention PIGD at all.

The bottom line, though, is clear: there is a test available that will give prospective parents useful evidence of an increased risk of very serious diseases in IVF embryos – a test that could be used to sort out embryos that do or do not have such an increased risk – and that test is being withheld by a company that is using its legal rights to unilaterally force parents to accept a genetic crapshoot on that particular disease (almost all other potential phenotypes, of course, are still subject to such randomizing – but in most cases because no such test exists, not because parents can know their embryos’ risk and somebody else has simply decided not to let them). Parents are being forced to forego a choice that might otherwise have been within their hands as to whether their offspring will have to run an increased risk of breast or ovarian cancer – a risk that can be 80 times normal in families with a history of the disease. Furthermore, what this test presents parents is information about their own, and their embryos’, genetic makeup. In other words, people are being told they can’t know about their own genes, or their potential children’s, because somebody else has decided to exercise their legal ownership of those people’s genetic information.

There is an open debate over the potential dangers of PIGD and “designer embryos”, but I think it’s fair to say nobody wants that debate to be settled by the unilateral whims of corporations and their intellectual-property lawyers. Here, even families whose risk profiles are extreme have no access to their own health information. The healthcare setting is rife with self-aggrandized authorities – doctors, insurance companies, the government . . . – who take it upon themselves to make patients’ decisions for them. But for a commercial company to simply sequester an entire body of diagnostic information is staggering, and infuriating.

If we have to have a showdown over PIGD and genetic enhancement, so be it. But let’s get the genetic claimjumpers out of the field before we do.

I’d still like to know exactly what Myriad’s motive is, or what they hope to get out of this move. Any ideas? Any info?

One Response to “We Own Your Diagnosis, and We’re Not Letting It Go”

  1. Sufficient Scruples » Blog Archive » We Have No Idea What We’re Talking About, But We Thought We’d Panic Anyway Says:

    [...] As a follow-on to the below post on PIGD in England, Pro-Life News reports on the same story and then comments (complete with misspellings and scare quotes): Doctors tested embryos created by the woman and her “partner” using in-vitro fertilisation (IVF) methods for the cancer gene. Only unaffected embryos were implanted in her womb, the newspaper said. But it is not reported how many babies the so call “doctors” killed in the screening proucess. [...]

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