Scientific research is an ongoing source of hope for individuals and families affected by illness. The promise of improved diagnoses, therapies, and prevention strategies has motivated many individuals to get more directly involved in the promotion of scientific research on conditions affecting themselves and their family members. Disease advocates have made significant contributions to medical advancement and human welfare.
|ADVOCATES. (clockwise from top left): Augusto Odone and his son Lorenzo for Adrenoleucodystrophy; Betty Ford for addiction; Nancy Wexler for Huntington's disease; Douglas Melton and his son for diabetes; Heywood family for ALS; Hugh Rienhoff and his daughter. (Photo credits: Nancy Wexler photo © Steve Uzzell; Heywood family photo © Richard Horward; Hugh Rienhoff © Nature Publishing Group)|
A motivating force behind the creation of the Personal Genome Project is to provide individuals with an opportunity to share their personal medical information with the scientific research community for purposes that promote human welfare through the advancement of scientific and medical discovery.
The information in our medical records, our DNA, our physical traits, and our environmental exposures has the potential to provide insights that can change our ability to manage and prevent debilitating diseases. Whether one is healthy or dealing with illness, everyone possesses information that may ultimately contribute toward improving the health of others and future generations.
The answers to many fundamental questions about our basic biology, our experiences as individuals, and our history as a species will be illuminated by scientists once they have access to large datasets that contain many human genomes tied to other forms of personal information, such as medical history or physicial traits. Thus far, only a handful of individuals in the world have been extensively sequenced and studied by the research community. The PGP aims to change this by giving individuals an opportunity to obtain a genome sequence and share it alongside other personal information with researchers to advance scientific discovery.
The PGP will also provide researchers with an opportunity to assess non-medical associations that may not have as high priority as medical studies, such as biometric associations and the genetic basis of common physical traits like handedness and eye-color.
Like other areas in human history, personal genomics will likely benefit greatly from "early adopters" who are willing and able to endure the difficulties and uncertainties that go along with exploring relatively uncharted territories.
Early adopters of genome sequencing might be driven by self-curiosity or the pursuit of personal interests in biology or computing. Professional interests might be another reason for being an early adopter of personal genomics, especially for individuals whose work may be impacted significantly by genomics in the near future, such as certain health care workers, policy-makers, and IT professionals.
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