PredictER's profile

Program Description:

Now that the human genome has been sequenced, large predictive health projects are being undertaken that combine health data from medical records with genomic data from biological tissue samples. These studies seek to identify genetic and environmental factors associated with health and disease to predict the risks associated with disease onset, and in so doing to better prevent and treat disease. A 3-year $750,000 grant from the Richard M. Fairbanks Foundation to the Indiana University Center for Bioethics (IUCB) has established a new multidisciplinary research, policy development and public education program that will examine the ethical, legal and social issues arising from predictive health research studies. The initial goal of the Program in Predictive Health Ethics Research, called PredictER, is to build strategic bioethics research capacity to support ongoing studies in Indianapolis and Central Indiana.

Some of the key ethical and legal issues PredictER addresses include:

Informed Consent. Deciding how much information to give to patients, whether they can consent for future use of their samples, or whether they should be re-contacted for further studies.

Returning Health Information to Patients. Under what conditions should research information be given to patients, especially if the information has no diagnostic relevance?

Management of Genetic Privacy. Current legal and social protections for individual privacy and confidentiality are inadequate, placing people at risk of discrimination and stigmatization.

Commercialization of the Body. Many unresolved issues exist about ownership of DNA, donors' rights to share in and control discoveries made with their tissues or health information.

PredictER has three main functions: (1) developing key policies applicable to predictive health research, and provide prospective, proactive advice to investigators and senior decision makers (2) undertaking and catalyzing multidisciplinary research studies on ethical, legal, social issues, and (3) developing information content and strategies to ensure that there is active public awareness of and support for predictive health research

PredictER is housed in the IUCB Center for Bioethics, a university-wide center established in 2001 on the campus of Indiana University-Purdue University Indianapolis (IUPUI).

Predictive Health Ethics Research (PredictER) is a multidisciplinary research, policy and public education program of the Indiana University Center for Bioethics funded by a grant from the Richard M. Fairbanks Foundation, Inc. Indianapolis.

For more information about PredictER's CiteULike library contact Jere Odell <predicter.alerts@gmail.com>

Bioethics, Predictive Health Research, Translational Medical Research, Medicine 2.0, Electronic Health Records, Genetics, Genetic Testing, and other related topics.