September 10, 2013
-->Privacy is a big topic that’s getting bigger and more complicated every day. People increasingly accept that just about anyone can find information about them on the Internet. Indeed, millions make it easier by sharing details on social media.
With respect to health and healthcare, it’s thrilling to look forward to a time when cures are found and people who have banked their genetic code can be contacted to learn about and benefit from them.
At the same time, many are concerned about potentially negative consequences of the availability of genetic information. What if, in the wrong hands, it could affect health insurance, employment, loans, a divorce or custody case, even the chance of finding a spouse – not only for the individual but other living and future relatives?
The Center for Practical Bioethics’ 2013 Fall Symposium, “Ethical Frontiers in the Brave New World of Genomics and Learning Health Systems” on November 8 will explore the ethical implications of whole genome sequencing in light of its rapid growth and importance to Learning Health Systems, where knowledge is drawn from every encounter, both research and clinical, yet policies regarding the handling of data differ substantially.
The Presidential Commission and Beyond
· Strong baseline protections while promoting data access and sharing
· Data security and access to databases
· Informed consent process
· Facilitating progress in whole genome sequencing
· Public benefit from medical advances that result from whole genome sequencing
“The Presidential Commission’s work and the Center’s Symposium,” said Alan Rubel, JD, PhD, “are first steps in the process of tailoring the apparatus we already have in place to deal with the problems inherent in whole genome sequencing.” Dr. Rubel served as an advisor to the Presidential Commission, an assistant professor at the University of Wisconsin School of Law, and will join the faculty at the Symposium.
Procedures to Drive Benefit & Minimize Risk
“The potential for people to benefit and suffer negative consequences from whole genome sequencing is substantial enough that we need to develop procedures to ensure that we derive the most benefit without jeopardizing people’s well being,” said Dr. Rubel. “How information is used isn’t always clear. There ought to be some way – some standard language – to convey what the possibilities are so that people donating material or having their genome sequenced can be said to properly consent. There are issues of data security as well.”
Dr. Rubel is a strong proponent of providing more and better information to the public about what whole genome sequencing can and cannot do. “Many conditions have to do with chronic and environmental disease that can be prevented by changes in lifestyle, independent of genomics, and may be better addressed without getting into genomics.”
He also believes that concerns about privacy often mask other worries that may be best understood as issues of justice. “If, for example, our worry is that genetic information being disclosed will harm our employment, it may be that the real problem is how vulnerable people are in terms of employment, and if we deal with that, the genetic issue goes away.”
About the Symposium
At this Symposium, you will:
· Hear updates on progress in the brave new world of genetic science.
· Gain insight into ethical issues around data collection, privacy and informed consent, especially as they apply to genomics and Learning Health Systems.
· Explore what type of ethical framework is needed to advance research while protecting human subjects in Learning Health Systems.
September 14, 2009
Hat tip to the Business Ethics blog for letting us know about a new research study on personal genomics, privacy and consent currently underway being conducted online from researchers at at University of British Columbia, Saint Mary’s University, & Ryerson University.…
September 3, 2009
It turns out it wasn’t all a bunch of rubbish when our parents told us as children that each one of us was very special, in fact unique, from everyone else.…
June 5, 2009
Facebook and other social networking sites. Direct-to-consumer genetic testing. A taxonomy for empirical bioethics.
The issues were so important, so numerous, and so overwhelming that it took a special DOUBLE issue of AJOB to cover them all.…
April 24, 2009
The Saint Louis Post Dispatch says that the sequencing of the cow genome is going to lead to more milk and better beef, but all I can say for sure is that it certainly is an interesting step forward in the world of genomics.…
October 20, 2008
Announced today in the NYT, Harvard Medical School unveiled the first 10 participants in their Personal Genome Project.
Ranging from entrepreneurs to academics to healthcare execs, the goal of the project is to raise awareness about the possibility of personal genomes for everyone.…
October 6, 2008
Next Big Future says that Applied Biosystems has announced that the $10,000 complete human genome is now in reach, taking less than 2 weeks to sequence the whole shebang.…
May 29, 2008
By Ricki Lewis
Francis Collins, the soon-to-be former director of the National Human Genome Research Institute (NHGRI), boldly ventured where not too many scientists dare the press room.…
April 22, 2008
Writing in the Washington Post this week, David Shaywitz highlights some of the unintended consequences of the newer mass-scale approaches to studying genes:
A pioneer of this era, MIT geneticist Eric Lander, speaks eloquently of the “global view of biology,” meaning that scientists now have extraordinary tools to study not only individual genes, but also multiple genes at the same time.…
March 4, 2008
From Amy Harmon’s piece in NYT about how genome sequencing is becoming a luxury item:
Id rather spend my money on my genome than a Bentley or an airplane, said Mr.…