What does IBM’s Supercomputer mean for your genes?

What does IBM’s supercomputer Watson have to do with research? Stockpiles of genetic metadata combined with the advanced capabilities of supercomputers may be the key to specialized disease treatments at the individual level. Ethical issues, however, add layers of complexity to genetic testing and reporting. Should companies be allowed to conduct genetic testing to report health risks directly to consumers, or should this service be limited to tests ordered by physicians?

Bioinformatics is a multidisciplinary field aimed at processing and analyzing biological information. New bioinformatics methods may be a gateway to specialized disease treatments tailored to patients’ own genetic profiles. Ethical questions have come to the forefront of the debate as the collection of genetic data and bioinformatics processing requires the storage of large amounts of individual genetic data. As society continues to scrutinize the ethical implications, NWABR strives to educate and engage our community in dialogue around this issue and we want you to join the Conversation.

In NWABR’s Introductory Bioinformatics curriculum, NWABR covers ethical questions about genetic testing and the application of bioinformatics in the field. The curriculum explores how bioinformatics tools such as BLAST and Cn3D are used to investigate the genotypic and phenotypic consequences of a mutation to the Breast Cancer Susceptibility 1 (BRCA1) gene, which increases risk for breast and ovarian cancer. Ethical questions covered in the curriculum continue to pose challenges for researchers. As the costs of genetic testing decrease, ethical concerns about consumer privacy, impact on family members, test usefulness, access to genetic information and more will continue to arise.

Take, for example, IBM’s Watson computer. The British Broadcasting Company (BBC) recently highlighted the promise offered by the supercomputer to help fight common types of cancer. Data synthesis from Watson’s artificial intelligence platform is already being used to inform lung cancer treatment on an individual basis at the Memorial Sloan-Kettering Cancer Center in New York (BBC, 2013). Watson is capable of mining and decoding genetic information and identifying patterns in metadata in mere minutes — a process that would take researchers weeks or months—. This type of analysis requires large quantities of genetic data to ensure that correlations in gene sequences can be identified with enough statistical significance to lead to personalized treatments.

NWABR’s public outreach is also current. We recently presented a Community Conversation, “What Can Your Genes Tell You?,” that explored the ethical implications of Food and Drug Administration (FDA) regulation of direct to consumer genetic testing kits (Link 3). The Conversation centered on the private genetic testing company 23andMe, which offers consumers a Saliva Collection Kit and Personal Genome Service for $99. When consumers submit a sample, 23andMe creates a report utilizing metadata from scientific studies about single nucleotide polymorphisms (SNPs) and their association with health risk, genetic traits, drug response, and ancestry.

In 2013, the FDA ordered 23andMe to stop marketing and reporting health-related services because the company was not in compliance with the FDA rule for medical devices under the federal Food, Drug, and Cosmetic Act. Participants in the Community Conversation focused on privacy, trust, and control of data as well as the commercialization of DNA; the need for access to and assistance interpreting reports; resistance from members of the medical community in applying consumer-acquired data; and the lack of ethnic diversity in the 23andMe database.

There is no simple path forward when it comes to the generation, interpretation and application of genetic information. Medical professionals are able to use genetic data, synthesized by a supercomputer, to develop customized treatments for cancer patients. Regulations dictate how companies like 23andMe may use and report direct to consumer genetic data, which could reduce access to potentially valuable information. NWABR knows that engaging in dialogue around complex issues is imperative to identifying solutions and policy frameworks that work for all.

Regards,

 

Troy Chapman

Join the Discussion

NWABR wants to continue these Community Conversations, and has created a secure forum for your online dialogue. Start us off by sharing your thoughts. Here are a few questions to ponder: How can we manage the vast amounts of genetic data that are becoming available, and what can we do to protect privacy? What does genetic testing mean for sample donors, investigators, biorepositories and bioinformatics? What levels of clinical validity and transparency should be required when reporting disease risk, whether through tests ordered by a physician or by a consumer? What are the tradeoffs between FDA regulation and personal empowerment through access to genetic information?

To join the discussion email Troy Chapman at membership@nwabr.org.

For additional information follow the links below.

Resources

Community Conversation program page. http://www.nwabr.org/communityconversation

NWABR blog post on the Community Conversation by Ken Gordon, March 19, 2014. http://nwabr.wordpress.com

“FDA orders 23andMe to halt sales,” Nov. 26, 2013 (radio program). www.kqed.org

Genomics Law Report blog posts from Dec. 3, 2013. www.genomicslawreport.com

“Should the FDA stop you from scaring yourself with 23andMe’s DNA test?” Washington Post. http://www.washingtonpost.com/blogs/wonkblog/wp/2013/12/06/should-the-fda-stop-you-from-scaring-yourself-with-23andmes-dna-test/

The Spitoon, the 23andMe blog, posts from November and December 2013. http://blog.23andme.com  

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Half of US adults 40 to 75 eligible for statins

A report in today’s Seattle Times suggests that cholesterol lowering statins will be in most of your futures.  Based on research from Duke University (which surveyed 4,000 people) it is now estimated that half of US adults between the ages of 40 to 75, and nearly all men over the age of 70 meet recently changed criteria for the use of statins. 

The guidelines for the use of statins were devised by the American Heart Association and the American College of Cardiology.  The Duke study estimates that half a million strokes and heart attacks over a ten year period could be prevented if the new guidelines were followed. 

There is some criticism of the new guidelines which favor the use of statins over other lifestyle changes (such as not smoking or working to reduce stress).

Ken Gordon

Executive Director

Community Conversation – 23andMe – What Can Your Genes Tell You

Last evening (Tuesday March 18, 2014) the Northwest Association for Biomedical Research (NWABR) hosted a Community Conversation that explored the issues around Direct-To-Consumer Genetic Testing.

These Community Conversations are a partnership between NWABR and the Institute for Translational Health Sciences at the University of Washington.  The purpose of these Community Conversations is to enable members of the public to become engaged with emerging issues in the bioscience realm.  Our hope is that an engaged public will be better placed to think through complex scientific and ethical issues, make informed contributions, build relations with experts in the field – and most importantly – provide those same experts with feedback from a community perspective on these issues.

At the Community Conversation hosted yesterday evening around 35 people gathered to discuss direct-to-consumer genetic testing services.  The company 23andMe has been providing this service to customers and approximately 650,000 people have both had their DNA tested and agreed to share their records to help build a DNA database that will, hopefully, in the future improve the accuracy of the findings that 23andMe can report to their customers.

The FDA has asked 23andMe to stop marketing the health benefits of this testing service and to no longer provide direct findings to customers about any health implications arising from the genetic tests that they perform.  The FDA is concerned that a consumer may misinterpret the results that they receive from 23andMe and subsequently make poorly informed health care decisions.

Yesterday’s Community Conversation was held at Kakao Chocolate + Coffee in Westlake.  The Conversation was facilitated by Sarah Nelson and Lorelei Walker, who are MPH and PhD candidates in Public Health Genetics at the University of Washington.  Following the presentations from Ms. Nelson and Ms. Walker the participants had a wide ranging discussion that touched on: privacy, trust, potential commercializing of DNA, the need for access to this information. the need for help in interpreting the information, resistance from some members of the medical community, the current lack of diversity in the 23andMe database, support for and frustration with the FDA and much more.

As we the staff at NWABR watched the conversation progress we were amazed that such a great group had come out on a Tuesday evening, given up their own time, and dived so eagerly into this complex area.  We were again reminded of just how rich discussions can be when these two sometimes diverse worlds come together.

Regards

Ken Gordon

Executive Director

Northwest Association for Biomedical Research

Annual Member Meeting

The annual member meeting of the Northwest Association for Biomedical Research (NWABR) is scheduled for 4pm on Thursday March 20, 2014.  The meeting will be held in the Volney Richmond Auditorium, First Floor of the Lindeman Pavilion, 1201 Terry Ave., Seattle WA 98164.

The meeting will consider the election and reelection of Board Members of the Association and the Association’s Annual narrative and financial reports.  Following the conclusion of the Annual Member meeting there will be an Annual Board Meeting to elect or reelect Board Officers.

Members of the Association and those interested in the ethical conduct of biomedical research are invited to attend the annual meetings.

Refreshments will be available and NWABR staff will be present to both introduce and highlight their programs.

 

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Registration Opens for NWABR’s Camp BIOmed, a new summer camp for high school students

Students entering 9th-12th grade can now sign-up for three of the four exciting summer camp sessions organized by Northwest Association for Biomedical Research (NWABR).  Each of the four camp tracks for Camp BIOmed are a week long and will be repeated for seven weeks, starting July 7 through August 23.

Students and parents can register and find additional information about the programs at www.nwabr.org/campbiomed.

The four summer camp programs focus on various topics relating to biomedical research and its ethical conduct, which include:

Bioethics thru Gaming
Protein Foldit! Be a Citizen Scientist
Hive Bio (Do it Yourself) Lab with Neuroscience
Lab Intensive Experience

Throughout the summer camps, students will take part in hands-on experiments at local biomedical businesses and research facilities, track their own findings as part of these experiments in lab journals, and tour local Seattle biomedical organizations. Each week of the summer camp will conclude with a culminating expo where campers will share all group and individual projects and contributions.

Early bird registration is open now for members for $450-$525 depending on track.  Non-members can begin registering on January 29 by signing up as a member ($25, plus the camp fee).  The price for camp for all will increase after March 31 by $90 for all tracks.  Financial assistance for partial camperships are available for students to attend the program.  The financial assistance application is available in the camp registration at http://www.nwabr.org/campbiomed

To register for Camp BIOmed check out www.nwabr.org/campbiomed

For more information, contact camp@nwabr.org

About NWABR

NWABRs mission is to promote the understanding of biomedical research and its ethical conduct. NWABR is dedicated to strengthening public trust in biomedical research, through education and dialogue. Through our diverse membership of academic organizations, biotech industry, non-profit research institutes, health care, and voluntary health organizations, along with extensive education programs, we foster a shared commitment to the ethical conduct of research and ensure the vitality of the life sciences community.

Legislative Update: NIH Budget Crisis

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Legislative Update – NIH budget crisis:

July 18, 2013

SUMMARY – The Senate Appropriations Committee voted last week to increase NIH research funding as well as funding for the Science Education Partnership Award (SEPA) and the Office of Science Education (OSE) within NIH. Appropriators in the House have yet to schedule a markup of Health and Human Services spending bill at either the subcommittee or full committee level. Now is the time to contact your Representative in the HOUSE to advocate for robust funding for NIH research and education efforts!

Find your Representative HERE.

See our earlier blog posts for additional contacts and a sample letter urging Congress to preserve health science education!

For more information, visit HERE.

DETAILS -
OVERALL NIH RESEARCH FUNDING
From Research! America:
“The Senate Appropriations Committee voted to increase NIH funding by $307 billion in FY14, an increase largely due to the unwavering support of Labor-HHS subcommittee Chair Tom Harkin and Appropriations Committee Chair Barbara Mikulski. The Senate bill also increases funding for the CDC by $1.6 billion over FY13. It is important to note that the Senate bill does not include sequestration reductions, but Mikulski has vowed to fight these dangerous, continued cuts. We all realize that these proposed funding levels are not adequate to capitalize on the current opportunity in science and respond robustly to the needs of patients and their families, but they are significantly better than what the House has in store. The overall funding level in the House Labor-HHS bill, which includes NIH, CDC and AHRQ, is 26% less than the Senate’s proposal, leaving the outcome of any kind of budget deal bleak indeed. “Compromise” between the two houses would be significantly worse than a continuing resolution, and sequestration is still in place. In short, the welcome action of the Senate is not likely to become the law of the land. We have work to do!

Americans are taking for granted that policy makers are giving research a high priority, and since policy makers are not hearing from their constituents, they are not thinking twice about cutting research as part of deficit reduction. People are surprised to find out that research isn’t the priority it once was; surprised to learn about cuts that have already occurred; and openly shocked to hear about further cuts being proposed… We must inform Americans and then translate the shock of understanding into advocacy. We have been urging more Americans to speak out via Twitter using the hashtag #curesnotcuts. Please join in.”

Please consider contacting your congressperson to express that funding for biomedical research and health science education is important to you!

SCIENCE EDUCATION AT NIH
The Senate Appropriations Committee recommends that SEPA and the Office of Science Education, which are both within the NIH Office of the Director (OD), be funded in 2014. Here is the language from the Senate Appropriations Committee Report that was released July 11th (p. 103 of report).

“The President’s budget recommends eliminating the Science Education and Partnership Awards [SEPA] program within OD and consolidating it within the Education Department as part of a governmentwide reorganization of STEM education activities. The proposed consolidation would also affect the Office of Science Education within OD and several other smaller STEM programs throughout NIH. The Committee is not convinced that the quality of these programs would be maintained if they were moved to other Federal agencies. Therefore, the Committee directs NIH to continue funding these programs in fiscal year 2014. The Committee includes sufficient funding within OD to support SEPA and the Office of Science Education.”

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Save NIH SciEd funding Congressional Action Plan

Hello NWABR supporters and friends,

As many of you know, funding for science health education is on the Congressional chopping block. Specifically, the Science Education Partnership Award (SEPA) grant that has supported many of our educational endeavors over the last decade has been halted indefinitely. We are writing to inform you about the plan developed at the NIH SciEd 2013 Conference for educating Congresspeople about the need to continue funding for NIH K-12 and informal science and health education programs.

This Action Plan is a response to the White House’s fiscal year 2014 plan to consolidate funding for K-12 and informal science education, which resulted in NIH’s recent announcement about indefinitely placing a halt on funding for the programs it funds. NWABR’s Jeanne Chowning posted a blog entry summarizing the issues - http://nwabr.wordpress.com/2013/05/01/nih-science-education-programs-at-risk/

Many of you have asked how you can help support the reinstatement of funding for these important health literacy programs for the students, teachers and families we serve.  We invite you to join us in our effort by urging you to do the following immediately:

1. Write the following individuals about this issue – an example letter is attached.

Sending email is best, unless you hand-deliver a letter to their local office. Paper letters sent to DC can take up to 2 weeks for delivery due to security screening measures.

The websites have a form in which you can place the text of your letter. Check these first to familiarize yourself with the format.

Washington, D.C. Office
2365 Rayburn HOB
Washington, D.C. 20515
202-225-6506
202-225-0546 (fax)

2. Urge the following people to also write the above individuals about this issue

It is critical that we get as many people as possible to contact the following people so that they take notice and take action:

  • Your institutional leaders
  • Teachers, students and families who have benefited from NWABR’s programs
  • Your colleagues
  • Your professional associations
  • Your friends, family and anyone else you have connections with

3. If you work for an institution, find out if your institution has a government relationships representative/lobbyist in Washington, DC and contact them – the attached information sheets may be helpful:

The halt in NIH funding for K-12 and informal science and health education is not a done deal.  Rumor is that members of Congress are receptive to a hearing, if the proposed consolidation will affect programs. With your support in writing these letters we can take  a critical step towards moving them to act.

Again, we urge you to take this opportunity to show your support by making your voice heard immediately.

Please join us in educating our elected officials about this critical issue.

With appreciation,

The NWABR Team