Privacy and Progress in Whole Genome Sequencing Webinar
Prerana Bhattacharya writes:
Imagine your child is ill. You’ve taken him to many specialists, and each one shrugs at your case before referring him on to another physician. You’ve searched hospital after hospital, spoken to physicians from around the globe, and even tried your luck on WebMD, yet nothing works. Your child’s symptoms continue intensifying, and your hope begins to wane.
With the advent of new genetic technologies, many of these true stories are allowed a happy ending. Whole genome sequencing is a bright future in personalized medicine. With just a little blood or tissue, and the secrets of an individual’s genome can be revealed. Rare genetic diseases can be identified, new treatments tailored to one’s specific genes and lives can be prolonged. As the cost of genomic sequencing lowers to between $1000 and $5000, possibilities of clinical application of this new technology blossom.
With the spread of genomic sequencing comes the issue of privacy of genomic information. As such, the Presidential Commission for the Study of Bioethical Issues has recently released a report entitled ‘Privacy and Progress in Whole Genome Sequencing.’ The Genetic Alliance, a non-profit organization dedicated to the advancement of public health, is holding a webinar series about the report and how it will affect health care and privacy policy, medicine, genomic research and the people. The first of the series was held February 12, 2013.
Kayte Spector-Bagdady, who is the Assistant Director of the Presidential Commission for the Study of Bioethical Issues, joined the Genetic Alliance today to present a summary of the commission’s most recent report. She is a JD who works in medical law. This report analyzes privacy hurdles that need to be dealt with by the United States regarding new genomic technologies while still remaining unrestrictive to research in this new field. Spector-Bagdady began her presentation by explaining the process by which the commission chose to study this particular topic and what kinds of public feedback and meetings were involved in creating the report itself.
The commission collected data from 18 common rule agencies and departments regarding who is involved in genomic research and whether they anticipate various types of regulations impacting them. People are extremely worried about security breaches in genomic data because even if the genome is de-identified, it is so unique to each person. There is such a wealth of information included that any breach of security can affect not only the individual, but all of his family as well. As such, it is necessary to amp up privacy regulations for this information.
Key findings were that current laws do not fully protect individuals who participate in genomic research. However, in order for this new field of medicine to flourish, it is necessary that people of all backgrounds share their information with researchers and that researchers collaborate and have access to genetic data. As such, the ethical obligations of conducting genomic research often reach beyond what is legally enforceable. The commission recognizes the disconnect between what ought to be done to retain privacy for the individual, and what is most feasible given the government’s legislative powers. As such, the report outlines what ought to be done and as well as giving recommendations about what kind of laws can feasibly be out in place to ensure privacy of genomic data while still allowing for as much freedom in research as possible.
The commission wants to create protocols to measure all genomic research against 5 key ethical principles outlined in the report, including Respect for Persons, Public Beneficence, Intellectual Freedom and Responsibility, Responsible Stewardship, Justice and Fairness and Democratic Deliberation. As of now, there are laws protecting against discrimination based on genetic information, disclosure of information, research protections only if data is ‘readily identifiable.’ However, there are no comprehensive federal privacy protections or guidelines for commercial testing. This report focuses on three facets of protections of privacy: protecting the individuals who choose to share their genomic data, securing information technology that holds this data and including policy systems of privacy.
Next, Specter-Bagdady briefly went over the recommendations made in the report. The commission recommends there be Strong Baseline Protections While Promoting Data Access and Sharing, Data Security and Access to Databases for researchers, stringent Informed Consent for participants in research, Facilitating Progress in Whole Genome Sequencing and the overall goal of all laws should always be for the Public Benefit. After presenting the findings of the commission, Specter-Bagdaddy went on to answer audience inquiries about the future of genomic research and privacy. She stated that there are no specific studies about how increased regulation will affect genomic research, but reiterated that the level of regulation afforded by the current legislation is by no means enough to see us through in this day and age, where cybercrime is becoming more prevalent.
Sadly, I think the law is always a few steps behind technological invention. We’re already having trouble regulating the digital products. What I’m wondering is whether or not we would be able to instate the appropriate genome privacy laws once we know what they should be.
Well, the problem with genetics is that it’s not like ordinary medical data – it’s so expansive and can tell you so much about a person, their history, their predispositions and sometimes even the person’s future. Because it can tell you so much, some studies have found that even when genetic information is de-identified, it is possible to use publicly available web searches and media and technology to attach a name to the genome. Not only that, but a person shares aspects of their genome with their family, so it’s not just the privacy of individuals, but their families as well. At the same time, free access to this information for scientists is pretty crucial to come up with new treatments for debilitating genetic diseases. You are definitely right Kyle in that the government has a hard road ahead figuring out WHAT steps to take before figuring out how they will actually implement these privacy laws as well.
Source: http://www.sciencemag.org/content/339/6117/321