Tag: genomics

Blog Posts (13)

September 10, 2013

Privacy and Whole Genome Sequencing

-->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

The Presidential Commission for the Study of Bioethical Issues’ report submitted to President Obama in October 2012, “Privacy and Progress in Whole Genome Sequencing,” made recommendations in six areas:

·      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.

Register now at https://www.practicalbioethics.org/register-learning-health-systems. For more information, contact Cindy Leyland at 816-979-1357 or cleyland@practicalbioethics.org.
September 14, 2009

Something to Say about Personal Genomics? Here's Your Chance.

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

There's Something Different About You. And You. And Everyone Else You've Ever Met. They Are All Mutants.

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

Special Double Issue AJOB 9:6-7 Available Now on Bioethics.net

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

Moooove Over Elsie. We Know Your Entire Genome Now.

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

Letting the Genome Loose? No Biggie.

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

Bargain Basement Genome

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

Francis Collins: A view from the press room

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

The noise gets louder

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

Which luxury: gene sequence or car?

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.

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Published Articles (7)

American Journal of Bioethics: Volume 12 Issue 10 - Oct 2012

Response to Open Peer Commentaries on “Surrogate Decision Making in the Internet Age” Jessica Berg

American Journal of Bioethics: Volume 12 Issue 10 - Oct 2012

Corrigenda

American Journal of Bioethics: Volume 12 Issue 10 - Oct 2012

Review of Marion Danis, Emily Largent, David Wendler, Sara Chandros Hull, Seema Shah, Joseph Millum, Benjamin Berkman, and Christine Grady, Research Ethics Consultation: A Casebook Emily E. Anderson

American Journal of Bioethics: Volume 12 Issue 10 - Oct 2012

Review of Robert Klitzman, Am I My Genes? Confronting Fate and Family Secrets in the Age of Genetic Testing Sonia M. Suter

American Journal of Bioethics: Volume 12 Issue 10 - Oct 2012

Surrogate Decision Making in the Internet Age Jessica Berg

American Journal of Bioethics: Volume 12 Issue 10 - Oct 2012

Genomic Inheritances: Disclosing Individual Research Results From Whole-Exome Sequencing to Deceased Participants’ Relatives Ben Chan

American Journal of Bioethics: Volume 7 Issue 4 - Apr 2007

The Study of Socioethical Issues in Systems Biology

News (8)

May 2, 2013 4:13 pm

Cancers Share Gene Patterns, Studies Affirm

Scientists have discovered that the most dangerous cancer of the uterine lining closely resembles the worst ovarian and breast cancers.

July 10, 2012 4:39 pm

Searching genomic data faster (MIT News)

In 2001, the Human Genome Project and Celera Genomics announced that after 10 years of work at a cost of some $400 million, they had completed a draft sequence of the human genome. Today, sequencing a human genome is something that a single researcher can do in a couple of weeks for less than $10,000.

June 20, 2012 3:42 pm

Boston Children's to Study Families' Preferences for Returning Results from Pediatric Sequencing Research (Genomeweb)

A study underway at Boston Children’s Hospital is investigating how the preferences of parents can inform a choice-driven and ethical system for returning secondary findings of genomic sequencing studies of young children. The project, led by Boston Children’s’ Ingrid Holm, is combining a series of cognitive interviews — to better understand subjects’ preferences and decision making in choosing what results to receive from their children’s sequencing data—with a study tracking the experiences of families who actually go through the process of receiving results.

June 19, 2012 11:55 am

Patient Privacy or Scientific Advances: Do They Have to Be Mutually Exclusive? (Genetic Engineering & Biotechnology News)

Three months after examining issues associated with researchers using data from whole-genome sequencing, the Presidential Commission for the Study of Bioethical Issues turned its attention to the other side of the balance it is striving to strike, by discussing issues associated with protecting the privacy of the individuals whose genomes are under study.

June 4, 2012 11:44 am

Living proof of the value of personalized medicine (Sarasota Herald Tribune)

Human genome sequencing is already helping researchers find new treatments for illness. Now an unusual case study suggests that the benefits of sequencing may be enhanced in combination with detailed blood tests. he case involves Michael Snyder, a geneticist who was both the lead author and the subject of a study on genomics reported in the journal Cell.

May 20, 2012 1:16 pm

Many Rare Mutations May Underpin Diseases (New York Times)

The task of finding the genetic roots of common disease seems much harder, dimming the promise of personal genomics and the chances of quick medical payoffs from the human genome project, given new data about the human genome in two reports published online in the journal Science on Thursday. It now appears that large numbers of very rare genetic mutations may underlie common human diseases like schizophrenia and cancer. But because the mutations are so rare, costly studies involving large numbers of patients would be needed to identify their role in each disease.

May 16, 2012 10:00 am

What Happens When One Man’s Genome Is Revealed (Wall Street Journal)

Dr. Michael Snyder, chairman of the department of genetics at Stanford University School of Medicine, learned firsthand how gene sequencing can change a person’s daily life. Snyder, who is 56, two years ago decided to see what genetics might tell him about his own health. He’s not alone, as the cost of mapping a person’s full genetic profile has been dropping quickly, as WSJ reports, raising questions about how best to use the information. Colleagues sequenced Snyder’s whole genome, which revealed a number of potential health issues.

March 28, 2012 6:01 pm

Panel Seeks Input on Ethical, Privacy Issues in Genomics Research (iHealthBeat)

On Tuesday, the Presidential Commission for the Study of Bioethical Issues published a notice in the Federal Register seeking public feedback on the ethical issues involved in the large-scale collection of genome data.