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Privacy vs. right to know
March 2012
by Lori Lesko  |  Email the author


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



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