Personalized Health Care Initiative Workshop: "Understanding the Needs of Consumers in the Use of Genome-based Health Information Services". CONCLUSION/FINAL Remarks

07/07/2008

We’re going to wrap this up very quickly. I’m going to make a few comments and then turn it over to Dr. Greg Downing; he started the conference, and he’ll end the conference and we’ll be on our way. This was to look at the future in this field and I think very clearly as we talked through this day, much of our future has arrived, it’s just lumpy. It just hasn’t arrived everywhere at the same time. There are elements that will affect our profession for 20 or 50 years; we see them, we know what they are. And then the day, I think, was really centered around, first, a convergence of thought -- that that’s a fairly desirable future from the point of view of consumers. From the potential of genomics, that there was divergence among the group over issues about regulation, oversight. What drives this? Is it the research and science that should drive it? Is it the market that should drive it? Is it both? What is this enterprise? I heard recognition on several things. One is that risk communications and effective communications, not only within the profession but with patients, will be key to whatever success comes out of our efforts; that there are very divided views on privacy, and they are very grate concerns over both privacy and the reliability and integrity of information.

There were additional concerns about the engagement of health care providers. How do we bring this future across our health care establishment? And there was a big question, what’s good enough? When is something good enough to be in the market and when is it not? I heard that least through this conversation all day. If I could sum this up, I would say that what we have here is a clear and predictable evidence of growing pains for a science moving very fast, turning pharmascience into a young industry, and trying to figure out how to handle the risk, the science, the motivations, the markets, the trust that have to be successful and have to come together in a system for all of this to be the benefit to have the potential that we all described at the beginning and thought we saw here. And I’m sure and still think we do.

Two observations: one, I am proud of my profession. I’m proud of my fellow health care providers and the scientists and the entrepreneurs in here who have all come together and had a very frank and open debate with a great deal of passion that’s sometimes sharp differences of opinion, but all done in a manner of most admirable mutual respect. I asked for no hitting and there wasn’t any. It just -- you followed orders very good. I’m so proud of you.

I did not hear the word ethics mentioned once. I heard regulation and I heard governance and I heard market and I heard the science and I heard the facts and I heard -- I never heard anybody talk about the ethics. And I think sometimes -- and I just throw this out for thought. Sometimes we have a tendency to take a scientific advance, make it work, and then we put it in a market or we take it to people, and then after awhile, then we start figuring out the ethics. But we often don’t figure out the ethics first, we often figure out the ethics after the governance has come along and been the third thing that’s kind of come in the wake of sometimes not thinking these important things through. And we are now reaching a point that the complexity and the power of our science is so overwhelming, that it almost butts up against the level that it begins to make a difference as to what we are as human beings. So I think as this community goes forward, the idea of developing an ethical framework, as you have developed these many other frameworks around these other issues, might be something to think about. Finally, all the thoughts here have been captured. We set out to have a conversation, we did that; I think my analogy to the Manhattan Project and the importance of the dialogue was not off at all. In fact, I’m more convinced of its appropriateness now than when we started. I think this will be a very great value to everyone concerned, and let me ask you to give one more round of applause to Greg Downing and his team who put this on. And I will turn the floor over to Greg for his final remarks. [APPLAUSE]

DR. DOWNING: Thank you, Michael. I think we have a small team of vested futurists within the department that worked over the last year to share ideas about how to facilitate a discussion that we think probably for everyone is at times uncomfortable, and perhaps that’s where the dialogue ends today is still with an unease but more reflective of an appreciation for other viewpoints that are exhibited here. And I’m sure if we came back a year from now we’re going to know a lot more about this terrain. I just wanted to finally thank Mike for helping work with the group that came together today. Obviously a lot of thought given to your remarks, and the appreciation that we have for being able to have a candid discussion about our own viewpoints is an important thing to start with. I think from the Department’s viewpoint there is a lot more work to be done and we’ve certainly been leaning on our Advisory Committees in a variety of different ways these past several years to help develop some of the boundaries about which the conversation and the actions that take place go forward. We’ll do that in the form of a summary from this meeting and it’ll be posted on the website and certainly the materials from this will be available to those who wish to utilize them for their work going forward.

I want to thank all the speakers again, and from Rick and everyone at the Department, we appreciate everyone’s engagement in this and hope that it builds on some of the foundations here about openness and transparency and the engagement that all of you had to ask yourselves the critical questions about whether we’re doing the right things in the right ways for the people that we’re all here for. So again, thank you for your time this afternoon. We’ve enjoyed the opportunity and hope that this has been a value to all of your efforts here as well. So thank you. [APPLAUSE]

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