Advancing Precision Medicine Act of 2016

Bill: 114-s-2713
Sponsor: Sen. Alexander, Lamar [R-TN]
Introduced: 2016-03-17 in the Senate
Policy area: Health
Subjects: Cell biology and embryology
Civil actions and liability
Congressional oversight
Department of Health and Human Services
Drug, alcohol, tobacco use
Evidence and witnesses
Freedom of information
Genetics
Government studies and investigations
Health information and medical records
Health promotion and preventive care
Intellectual property
Medical research
Medical tests and diagnostic methods
Mental health
National Institutes of Health (NIH)
Public-private cooperation
Research administration and funding
Right of privacy

Summary:
action_date: 2016-03-17
text: 

Advancing Precision Medicine Act of 2016

 
This bill permits the Department of Health and Human Services (HHS) to carry out an initiative to address disease prevention, diagnosis, and treatment that may include collecting from a diverse cohort of individuals information that can be used to better understand health and disease. HHS may carry out specified activities relating to the initiative, including coordinating with the Department of Energy to address supercomputing needs.
 In implementing the initiative, HHS must: (1) collaborate with the National Institutes of Health, the Food and Drug Administration, and the Office of the National Coordinator for Health Information Technology; (2) implement secure data sharing; and (3) ensure inclusion of a broad range of participants, considering factors that contribute to health disparities.
action_date: 2016-04-18
text: 

Advancing Precision Medicine Act of 2016

 
(Sec. 2) This bill encourages the Department of Health and Human Services (HHS) to carry out a Precision Medicine Initiative to address disease prevention, diagnosis, and treatment. The initiative may include collection of health information from a diverse cohort of individuals. HHS may carry out specified activities relating to the initiative, including coordinating with the Department of Energy to address supercomputing needs.
 
In implementing the initiative, HHS must: (1) collaborate with the National Institutes of Health (NIH), the Food and Drug Administration, and the Office of the National Coordinator for Health Information Technology; (2) implement secure data sharing; and (3) ensure inclusion of a broad range of participants, considering factors that contribute to health disparities.
 
(Sec. 3) This bill amends the Public Health Service Act to revise provisions regarding disclosure by researchers of the identifiable, sensitive information of research subjects. HHS must prohibit researchers from disclosing such information from federally funded research to persons not connected to the research. Researchers may apply to have other research covered by this prohibition.
 
Disclosures of such information are permitted if required by law, necessary for the medical treatment of the research subject, made with the consent of the subject, or made for the purposes of other research that is in compliance with regulations regarding protection of subjects.
 
(Sec. 4) HHS may exempt identifiable information collected for biomedical research from disclosure under the Freedom of Information Act.
 
(Sec. 5) The NIH may require recipients of grants or cooperative agreements to share scientific data.
 (Sec. 6) The NIH may approve requests by national research institutes to fund high-impact, cutting-edge research through transactions other than contracts, grants, or cooperative agreements. National research institutes must conduct and support high-risk, high-reward research.

Legislative actions:
action_date: 2016-04-18
text: Placed on Senate Legislative Calendar under General Orders. Calendar No. 428.
action_date: 2016-04-18
text: Committee on Health, Education, Labor, and Pensions. Reported by Senator Alexander with an amendment in the nature of a substitute. Without written report.
action_date: 2016-04-18
text: Committee on Health, Education, Labor, and Pensions. Reported by Senator Alexander with an amendment in the nature of a substitute. Without written report.
action_date: 2016-04-06
text: Committee on Health, Education, Labor, and Pensions. Ordered to be reported with an amendment in the nature of a substitute favorably.
action_date: 2016-03-17
text: Read twice and referred to the Committee on Health, Education, Labor, and Pensions.
action_date: 2016-03-17
text: Introduced in Senate