engaging community in predictive health

Engaging the Community in Predictive Health Research: Reporting on

PredictER's November 2nd Expert Panel

Research and the Community

In most predictive health projects, researchers need to obtain human

biological materials that can be stored for immediate or later use and

then linked to detailed health information from medical records.

Building biobanks and predictive health research projects requires a

supportive public. To succeed researchers need a representative sample

of willing participants, good state and institutional policy, and (of

course) funding. (This research also benefits from highly motivated

advocacy groups such as Susan G. Komen for the Cure.) In a few words,

predictive health is one of the most community saturated forms of

medical research to date.

Ethical Issues

The great good that will be accomplished by predictive health

research, with its ability to forecast a person's health future with

reasonable probability, must be pursued with careful consideration.

These studies raise ethical, legal, and social questions beyond the

scope of the current paradigm of medical research. Very basic examples

of these questions include: What do researchers do when they find that

an individual tests positive for a gene or other biomarker that puts

them at significant risk for a disease in the future? Can an

individual's biological material be used first to study one type of

disease or treatment and then later another? What protections need to

be in place to ensure that the sensitive information in an

individual's health record and genes does not result in employment or

health insurance discrimination?

The Pace of Translation

While questions like these may seem very scary when rattled off one

after the other, the truth is that predictive health is the future of

medicine--a future that hopes to fulfill the ambitions of the human

genome project, by providing an individual with a personalized

assessment of risk and response to treatment. The human genome project

succeeded in decoding a great deal of information, but what that

information means for individuals with heart disease, a family history

of cancer, or a smoking addiction, has not been answered. If current

research succeeds, this information will be translated into real

clinical applications in the not too distant future. Research looking

to define these types of predictors is well underway at most

universities--some, as exemplified by Emory's Predictive Health

Initiative and the TGen (Translational Genomics) project in Arizona,

have worked to establish comprehensive predictive health research

programs. Meanwhile, as The Wall Street Journal recently reported many

(up to 1,400) genetic tests are already available for individuals

interested in assessing their risks for a number of diseases.

Moreover, many specific predictive tests are already being used to

chart treatment paradigms in hospital care.

PredictER Engaging the Community

Still, the fact that predictive health is occurring does not answer

any of the concerns voiced earlier. These are concerns that the

PredictER program at the IU Center for Bioethics is working to

address. On November 2nd, PredictER convened a panel of 35 experts and

community advocates to begin to give shape to many of these concerns

and to explore ways to reach out to the community, build

collaboration, and encourage research while protecting individual and

public interests. While the panel of experts shared an understanding

of the progress of predictive health, it took an entire day of

brainstorming and discussion to reach consensus on what issues may be

present with respect to engaging the community. In the end, it was

clear that predictive health will require physicians, researchers, and

the community to join in constructive, mutually beneficial work. In

the near future a white paper will be published by the Center for

Bioethics with a more detailed account of the November 2nd event. This

paper will also introduce the next step in PredictER's community

outreach mission--a plan to engage central Indiana community leaders

and to listen to their concerns about the future of predictive health

research. -- Patrick Barrett

Posted by PredictER at 12:21 PM