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Thursday, 18 July 2013

Scientists seek to collect a 'blood database' of all U.S. newborns for 'research' purposes





It's bad enough that Americans are being constitutionally squeezed at just about every level of government, now scientists want to get into the act.


In the name of conducting "research," bioethicists are now arguing that blood samples left over from newborns are a wealth of potential information and as such should just be made available to scientists for study purposes, and not necessarily with the consent of the child's parents.

"Retention and use, without explicit parental permission, of residual dried blood samples from newborn screening has generated public controversy over concerns about violations of family privacy rights and loss of parental autonomy," write Michelle Huckaby Lewis, Michael E. Scheurer, Robert C. Green and Amy L. McGuire, in an op-ed for the journal Science Translational Medicine.

"The public debate about this issue has included little discussion about the destruction of a potentially valuable public resource that can be used for research that may yield improvements in public health," the team wrote. "The research community must advocate for policies and infrastructure that promote retention of residual dried blood samples and their use in biomedical research."

So, rather than have that debate, it sounds as though this particular group of "bioethicists" is arguing to have the rules changed to simply allow the scientific community access to what analysts say amounts to about four million infant blood samples annually.

Already the concept is proving controversial.


Parents in Texas, Minnesota said 'no'

The use of residual dried blood samples, or DBS, has led parents in Minnesota and Texas to sue their respective states over retention of the samples without their consent.

The Texas case resulted in the destruction of 5.3 million archived blood samples. Meanwhile, the Minnesota Supreme Court ruled that informed consent will have to be required for the blood samples to then be retained and eventually used for research purposes. In addition, Minnesota health officials say leftover newborn blood samples will be destroyed when medical screening is complete.

Bioethicists are complaining that this viewpoint is narrow-minded and is hampering needed research.

"The potential value to biomedical research for improving both public health and individual health must be part of the public discussion about what should happen to residual dried blood samples from newborn screening," Huckaby Lewis, of the Johns Hopkins Berman Institute of Bioethics, argues in the op-ed.

"The research community must advocate for policies that support the retention of these samples and their use in biomedical research," she continued. "We should be the generation that recognizes the potential value of these samples and commits to developing them as a resource to promote public and individual health."

"The scientific community has a responsibility to the nation and its citizens to use these resources ethically, but also to the fullest extent possible to improve the health of our citizenry," she said.

"There are few other ways to get a reasonable snapshot genetic change," Arthur Caplan, a bioethicist at New York University School of Medicine's Division of Medical Ethics, referring to the genetic information that would come from examining years' worth of samples, told Fox News. "To throw it away, or not use it, I think is shortsighted and doesn't serve anybody's interest."

Always, the statist argument is the same: Allow me to violate your constitutional rights for your own good and the good of Mankind.

Not everyone believes in a willy-nilly, privacy-busting approach to utilizing newborn blood samples for research purposes. For one, there should be nothing wrong with asking permission to use it.


Why not just ask?

The problem, say experts, is that too few states have established rules and regulations governing the use of such samples. And there is always the privacy issue.

Caplan and others say policies should be developed at the state and federal level that would allow scientists and researchers access to the samples but in a way that washes the identity of the child.

Therein lies the rub, privacy advocates point out. How many times has this been the goal - to protect a patient's privacy - only to have it revealed at some point down the road "accidentally" or via hacking?

There is a simple fix here. States should just ask parents what they want to do. Even then, parents should take into consideration that their child will someday grow into an adult who may have to deal with the privacy consequences of their decision.


Sources:
bioedge
sciencemag
Foxnews