biotech

A couple of weeks ago, the Texas Tribune reported on an investigation of the archiving of blood samples taken from newborn infants: "DNA Deception".

For decades, the state has screened newborns for a variety of birth defects, pricking their heels and collecting five drops of blood on a paper card. Until 2002, the cards were thrown out after a short storage period. But starting that year, the state health department began storing blood spots indefinitely, for “research into causes of selected diseases.” Four years later, DSHS began contracting with Texas A&M University’s School of Rural Public Health to warehouse the cards, which were accumulating at a rate of 800,000 a year. State health officials never notified parents of the changes; they didn’t need consent for the birth-defect screening, so they didn’t ask for it for research purposes. The agency’s rationale was that it let parents who asked opt out of the newborn blood screening and de-identified all of the samples before shipping them off (emphasis added).

So much for informed consent. "We're from the government, and we're here to help you."

The state was sued by parents last year and rapidly settled the lawsuit before pre-trial discovery. Now, it is suspected that the state was trying to avoid drawing attention to some of the uses of the blood samples -- including several hundred which were used to develop a forensics database of mtDNA variants.

E-mails indicate that in 2003, when the agency started to release blood spots for outside research, officials knew they had a parental consent issue on their hands — but tried to avoid it. When a researcher proposed a project, the director of birth defects monitoring wrote that he’d “prefer to not have to go through” the process of getting consent. Another agency official responded that parents "never consented for blood spots to be used for research. … On the other hand, I believe [the health department] already uses (deidentified?) blood spots for some research, so that might not be a big deal.”

All states now test for metabolic disorders in newborns; the tests require only a blood spot on treated paper. The National Newborn Screening and Genetics Resource Center has more information on the specific tests and a very up-to-date list by state. It is amazing to me, as someone who has had four kids in the last ten years, just how quickly these screening programs became universal.

It is therefore hard for me to believe that Texas is going to be an exception. Surely we'll discover that some other states are archiving these blood samples instead of destroying them? Checking them out to researchers for no-consent research?

A pair of articles in my browser tabs refer to bioethics.

Ronald Bailey, in Reason, writes about the "ethics" of life extension research:

"How dare you do this research? The earth is already being raped by too many people, there is so much garbage, so much pollution."

Ten years ago, an anti-aging researcher described this hostile reaction to her work in the pages of The New York Times. Not much has changed since then.

I had exactly the same reaction from my undergraduate students last time I taught my anthropological genetics course. Sure, they said, people might like to live longer. But wouldn't that be a bad thing? The world is too crowded as it is.

I'm thinking that death was far beyond the horizon of their bright young minds.

Much of Bailey's article describes the way ethicists try to put a numerical value on happiness, multiplied by a number of years. It's not different in principle from an economist estimating the financial damage of an early and unexpected death. But somehow it seems laughable to me -- as if an individual's happiness were the only important variable. What about the value of grandparents to their descendants, or the value of living history to the whole population?

This happened to hit my desktop at the same time as Sally Satel's article, titled "The limits of bioethics".

She describes the history and scope of bioethics. Satel points out that the name "bioethics" was coined by Sargent Shriver, amid a burst of interest in the problems of biological and medical decisions in the late 1960's. She mentions the establishment of think tanks and expansion of the bioethicists' brief during the 1970's and 1980's, and touches on the controversies over "conservative" bioethics during the last decade.

What is the proper role of ethicists in decision-making? Here's Satel's conclusion:

At their best, bioethicists are scholars who study the intellectual and social history of value controversies in medicine and biotechnology. They can teach us about the technical and cultural antecedents of modern debates and show us how to engage in disciplined moral inquiry. They are skilled at drawing conceptual maps of the dilemma at hand while enumerating various ways to resolve it. In these ways, bioethicists have much to offer. But beyond this, their value is mainly cosmetic or bureaucratic. When called upon by politicians, their main task is to neutralize explosive issues or to provide ethical cover for decisions that have already been made. When physicians summon them, it is mostly to mediate disputes between patients, staff, and family members regarding end-of-life decisions. The media tap bioethicists for high-minded sound bites. In hospitals and in governmental agencies, they man the regulatory ramparts.

Maybe some bioethicists would disagree, but I think most see themselves as scholars instead of apparatchiks.