The tiny spots of blood left after routine tests on
newborns could provide valuable information for researchers, but clear policies
that govern their use are needed so that the samples are not destroyed or
otherwise lost entirely, experts say. Each year, 4 million babies in the United States are screened for certain genetic disorders with a routine blood test. The leftover blood from these tests has a variety of
potential uses, and could allow researchers to create genetic databases to
learn how genes influence both rare and common diseases, said Michelle Huckaby
Lewis, a bioethicist at the Genetics and Public Policy Center at Johns Hopkins
University.
But few states have laws specifying what can be done
with these leftover samples, and as a result, their use has been controversial.
In Texas, families brought a lawsuit against the department of health after
learning that leftover samples were used for research without consent from the
parents. As part of the lawsuit settlement in 2009, 5 million archived blood
samples were destroyed. And Minnesota plans to destroy all samples so that they
cannot be used for any purpose other than the newborn screening tests.
Experts say the destruction of these samples is a lost
opportunity for future research. "There are few other ways to get a
reasonable snapshot genetic change," said Arthur Caplan, a bioethicist at
New York Univesrity School of Medicine's Division of Medical Ethics, referring
to the genetic information that would come from examining years' worth of
samples. "To throw it away, or not use it, I think is shortsighted and
doesn’t serve anybody's interest," Caplan said.
Scientists should advocate for policies that would
support the retention of these samples, while at the same time, taking into
consideration the ethics of patient consent. Currently, the most common use of
these leftover blood samples is to test equipment used in newborn screening to make
sure it is working properly, Lewis said. Some researchers have used the samples
to examine the prevalence of HIV, and detect environmental toxins. Before the samples in Texas were destroyed, some researchers had planned to use
them to look for genes linked to a rare brain disease.
So far, six states have laws requiring parents to
consent before their infants' blood can be used for research purposes. In
Michigan, one state with such a law, the samples are sent to a biotrust for
potential future research. Six states have laws that prohibit using the samples
for research. In 10 states, samples are kept for less than a year, Lewis said.
Because of what happened in Texas and Minnesota,
states that do not have laws to address the issue may be reluctant to retain
the samples for research because they do not want the controversy to affect
parents' participation in newborn screening, Lewis said. Public health
departments should be more transparent about how they plan to use the samples,
Lewis said. The best way to do this would be an "opt-in" approach
that asks parents whether they consent to have their child's leftover blood
sample used for research, Lewis said. There should also be more public
education about the benefits that could come out of research on the blood
samples, Lewis said.
In terms of what to do about older samples that were
kept without the consent of the parents, Caplan said it is still possible to
use these samples ethically. Researchers should work with the community and
patient advocacy groups to set up a panel in each state to review what their
state has collected, Caplan said. Then, the panel should ensure the infants'
identities are removed from the samples before they are used for research, he
said. "The crucial step is to make sure that the public understands that
no person today will have anything found out about them," Caplan said. Another
potential solution that has been suggested in Ireland is to make the public
aware of the existence of these archived samples, and giving individuals the
opportunity to have their specific sample destroyed if they chose, Lewis said.
Source: My health News
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