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Apr 4, 2012

The Impact of Personal Genomics Study to Start Collecting Data

  • The Impact of Personal Genomics (PGen) Study, which aims to assess the impact of consumer genomics, reports that it is ready to initiate its data-collection phase. PGen was launched with funding from the NHGRI. Joint principal investigators Robert C. Green, M.D., of Brigham and Women’s Hospital and Harvard Medical School, and J. Scott Roberts, Ph.D., of the University of Michigan School of Public Health teamed up with 23andMe and Pathway Genomics.

    “The goal is to produce results that can be translated into recommendations to guide policy and practice in this rapidly emerging area,” says Dr. Green. Genetic risk information plays an increasingly important role in the diagnosis and treatment of many diseases. PGen’s goal is to collect data to understand the motivations and expectations of consumers of personal genomic services, the psychological and behavioral impact of these services, and the associated ethical, legal, and social issues.

    The group leading PGen will survey consumers of personal genome testing to identify their motivations, expectations, and attitudes as well as their responses to learning their genetic disease risk, carrier status, and drug response results. PGen is set to launch with the distribution of surveys to new consumers of personal genomic services. PGen will enroll 1,000 participants in all: 500 customers of Pathway Genomics and 500 customers of 23andMe.

    “There has been considerable speculation but not a lot of data to inform the debate about the possible benefits and harms of personal genomics services,” says Dr. Roberts. “We hope that our study will help to bridge this evidence gap.”

    To carry out the research, Drs. Green and Roberts say that they have assembled an interdisciplinary team of experts with backgrounds in medicine, genetics, genetic testing policy and practice, health communication, genetic counseling, health psychology, health law, bioethics, and web survey design, many of whom have worked together on related prior research.

    At the end of the project, the PGen team expects to understand: (1) who seeks personal genomic testing and why; (2) the impact of test results on psychological response, risk perception, and comprehension, and personal utility; and (3) what consumers do with their genetic information (i.e., make health behavior or insurance changes, seek further information, or communicate with family and health care providers).


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