The third post of the conference at Brown will cover a round table. This forum was moderated by Professor Charles Ogletree of Harvard Law School. The following persons were involved in the forum:
- Healthcare Translation – Daniel J. Wattendorf, MD, MAJ, MC, USAF, Keesler Air Force Base
- Ethics – Thomas H. Murray, PhD, President & CEO, The Hastings Center
- Patient Advocacy – Sharon F. Terry, MA, President & CEO, Genetic Alliance
- Privacy – Joy L. Pritts, JD, Research Associate Professor, Health Policy Institute, Georgetown University
- Research – FrancisS. Collins, MD, PhD Director, National Human Genome Research Institute
- Institutional Review Board – P. Pearl O’Rourke, MD, Director, Human Research Affairs, ESCRO Chair, Partners Healthcare; Associate Professor, Harvard Medical School
- Legal – Richard A. Johnson, JD, MS, Senior Partner, Arnold & Porter LLP
- Economics – Edward Abrahams, PhD, Executive Director, Personalized Medicine Coalition
- Media – Jonathan D. Rockoff, Reporter (Washington Bureau), Baltimore Sun
- Insurance – James E.Purcell, JD, President, Blue Cross Blue Shield, RI
- Hospital – Joseph F. Amaral, MD, FACS President and CEO, Rhode Island Hospital
- Pharmaceutical Industry – Patrice M. Milos, PhD, Executive Director, Pfizer
- Politics – Paul T. Kim, AB, MPP, JD, Partner, Foley Haog LLP
Professor Ogletree posed the following situation. "Terry is a 25 year old woman who has just used Google's Health Kit and searched her family's history. She finds 2 maternal aunts with heart attacks in their forties. Who does that matter to?"
First he asked her PMD. "Does this matter?" The PMD representative was a physician from the Air Force. He said-"I don't have any guidelines on second degree relatives. I don't know what to do" Obviously he didn't read Maren Scheuner's articles.
Next Dr. Ogletree asks what other tools might she have used. Dr Collins answers that there is a study going on at Harvard where all employees were encouraged to input and utilize a family history tool. There will be an evaluation of pedigrees and risks.
Dr Ogltree then asks "What are the discrimination risks?" That is when the panel caught fire. Joy Pritts starts by stating that each state have different regulations, and that these regulations are filled with loopholes. She also states that Rhode Island has some of the best protections available. "Don't ever move! Because your protections don't follow you!" "I hope she doesn't work for Wal-Mart she says" Mr Kim then chimes in...."What's in the google box? What are they doing with your data? How protected is it?"
Professor Ogletree then shifts gears "This 25 year old woman receives an email from a Pfizer clinical trial coordinator offering enrollment. Should she join? What about protections?"
It is becoming evident that the existing legislation throws you to the wolves. Patrick Kennedy seated quietly in the crowd can barely contain himself and starts shouting at the crowd. He says HIPAA doesn't protect you. In fact if your provider or company utilizing your data (i.e. for research) goes bankrupt that your data is no longer protected.
Dr Milos of Pfizer then chimes in....."I don't think Pfizer is going bankrupt any time soon. She should enroll." Then Dr Collins quips "Who wants to place bets on that?" The crowd erupts into laughter.
The Sherpa Says: The moral of this roundtable was that there are online companies offering services. Who is to say that they won't go bankrupt and put your info out there. Only medical practices actually have the kind of protections a patient needs. No DTC company can be held liable for "losing/selling" your data, especially if they go bankrupt. In addition we learn that most PMDs are unaware of the significant role family history plays. The take home point is that the medical infrastructure is ill suited for this next transformation in medicine and Google is likely to give you more information about genetics in medicne.