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Privacy vs. right to know
March 2012
EDIT CONNECT
SHARING OPTIONS:
WASHINGTON, D.C. – By the time Joe and Retta Beerys' twins,
Noah and Alexis, were two
years old, both had severe health issues and a
misdiagnosis of cerebral palsy. After years of searching for answers and
visiting dozens of expensive
medical specialists, Retta happened to read a
newspaper article on a rare disorder affecting children—her own.
But after years of better health,
when Alexis Beery turned
13 in 2009, she developed breathing problems. In the span of two months, the
girl was rushed to a hospital emergency room
seven times and given daily
injections of adrenaline just to keep her air passageway open.
The
Beerys then turned to genetic testing at the Baylor
College of
Medicine Human Genome Sequencing Center in Houston that helped
determine the twins carried mutations in a gene. The discovery led to new
treatment,
and the siblings are now in good health. Alexis is playing soccer
and is on her school's track team, and Noah is doing better in school.
Retta Beery told her story before the Presidential
Commission on Bioethics' "Genes to Genomes: Collection, Use and Governance of
Human Genome Sequence Data" meeting
on Feb. 3. The meeting was chaired by Amy
Gutmann, president of the University of Pennsylvania. Beery also presented a
video of her daughter competing in the long jump.
"(At the Genome Sequencing Center) we had black-and-white
evidence on what was going on with Noah and Alexis," Beery told
the commission.
"We got the whole picture for the first time. We had a new path to follow."
During the question-and-answer period, commission member
Lonnie Ali asked Beery whether she had worried about the consequences of going
public
with the story of her family.
"This must have weighed on you as a mother, but how
concerned are
you with these issues of privacy for these children as they try
to seek insurance coverage?" Ali asked.
Beery said she and her husband agreed
that the benefit of
helping others was more important than potential risks, adding, "We believe
this saved Alexis' life, and … her life far
outweighed the privacy issues."
A strong focal point for the commission's bioethical inquiry
will be the fact that we now have more genetic information than we know what to
do with. The scale of collected and available genetic data raises the
bar on
issues such as data protection, privacy, consent and counseling.
In addition, the
increased volume of data amplifies the
potential for use and abuse for non-medical reasons. As part of Genes to
Genomes, the commission plans to
address how human sequence information is
collected and stored, what constitutes informed consent for genetic sequencing
and when incidental findings
and other results should be reported. The target
completion date for this project is mid-2012.
While the commission has no power to set policy or make
laws, it advises the president on bioethical issues that may emerge from
advances in
biomedicine and related areas of science and technology. The
commission works with the goal of identifying and promoting policies and
practices that
ensure scientific research, healthcare delivery and
technological innovation are conducted in an ethically responsible manner.
Wrestling with ethical issues begat by the emergence of
whole-genome sequencing as an addition to clinical care and
genetic research,
and the probability that genome sequencing tests will decrease to an affordable
$1,000—compared to millions for a battery of
diagnostic tests—makes the issue
relevant.
As the ethical questions mount amidst new tests,
balancing
the scales of privacy and the right to know is a challenge.
"The scale of collected
and available genetic data raises
the bar on data protection, privacy, consent and counseling," wrote John
Donnelly, author of the Presidential Commission blog. "The increased volume of
data also
increases the potential for use and abuse for non-medical reasons."
Within this topic, the
commission is exploring issues that
include how information is collected and stored, what constitutes informed
consent and a host of intersecting
privacy and access issues.
Commission members weighed in:
Jane Kaye, director of the Centre for Law, Health and
Emerging Technologies at Oxford University, said, "I see whole-genome
sequencing as another twist on things happening already on
science. What we
need to do is make [privacy concerns] more nuanced and allow individuals to say
how whole genomes are used."
George Annas, chair of Health Law, Bioethics & Human
Rights at Boston University School of Public Health, responded, "This is
fundamentally a reductionist (perspective),
but the more we look at genes, the
less we will look at the whole person and take the whole person into account."
Melissa Mourges, assistant district attorney and chief of
the Forensic Sciences/Cold Cases Unit in the New York County District
Attorney's office, said DNA has been invaluable
in solving crimes and
(exonerating inmates falsely imprisoned.) The Combined DNA Index System
(CODIS), which are forensic databases maintained by all
50 states and the FBI,
keeps DNA profiles of all known offenders. She said the system doesn't allow
for identification of a suspect until there's a
match in a case.
"We are never moving back with this technology," Mourges
said. With DNA data, "we
have evidence proving who done it—not beyond a
reasonable doubt—but beyond all doubt."
Daniel Masys, affiliate professor of
Biomedical and Health
Informatics at the University of Washington School of Medicine, said, "The
genome will tell the book of humanity, and as it is,
we only understand
one-third of the words. My major concern is that privacy not materially inhibit
the ability to decode that book and understand what
that means. Our ability to
acquire person-specific DNA data far exceeds our understanding of this
information. Genomics is the poster child for
complexity in healthcare."
Gutmann voiced concern about the public's lack of
understanding
around genetic testing.
"There are snake-oil salesmen out there for everything, and
if you go on
the web, you will likely find all kinds of offers" or claims about
the benefits of genetic testing, Gutmann said. "As a president of a university,
I
believe in not only getting more knowledge, but getting it out there to the
public. But to what extent, given that science takes time to develop, is
there
any concern about the amount of misinformation out there?"
Dr. Richard Gibbs, director of
the Human Genome Sequencing
Center at the Baylor College of Medicine, agreed.
"The slow pace of
discovery that can transform lives is
dramatically affecting … the distribution of this data." Gibbs said. "That is a
vastly higher risk than someone
who may foolishly sign onto a snake-oil
salesman … but the danger of not knowing is also a risk."
The
results of genetic testing are "uniquely private," Annas
said. "The most important part of genetic information is individual to you. You
can look at
your genome as your future diary. No one should open that diary without
your consent."
Mark
Rothstein, the Herbert F. Boehl Chair in Health Law and
Medicine at University of Louisville School of Medicine, asked, "Will genomic
information increase health inequality? At the very least, genomic
information
will likely be used in ways we can't predict now." Code: E031226 Back |
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