on Supporting the Future of Cancer Research, p. 101).
In addition to supporting science and research, public policies also must support the beneficiaries of this research—the patients. Above all else, access to comprehensive health insurance coverage is critical for all Americans, especially those who have experienced acute and chronic diseases, including the 1. 7 million Americans who will be diagnosed with cancer this year, and the 15. 5 million cancer survivors. The Affordable Care Act has provided major benefits for those affected by cancer, including a prohibition on the denial of insurance coverage based on preexisting conditions; Medicaid expansion; dependent coverage until age 26; a prohibition on annual and lifetime coverage caps; and coverage of prevention, early detection, treatment, and survivorship services. Any replacement of the current law must retain these provisions that are so vital for cancer prevention, detection, diagnosis, treatment, and survivorship.
Every year, thousands of individuals, including cancer patients and survivors, make the selfless choice to participate in federally funded cancer research so that effective preventive strategies and treatments continue to make a difference in the lives of those affected by cancer. National policies need to support this participation at every level, from protecting information, to covering routine costs of care, to ensuring that the patient experience is taken into consideration.
Current protections based on basic ethical principles for federally funded research involving human subjects stem from the Federal Policy for the Protection of Human Subjects, known as the “Common Rule.” Until January 2017, the Common Rule had not been updated since 1991, even though the field of biomedical research had evolved dramatically. However, on January 18, 2017, the U.S. Department of Health and Human Services (HHS) and 15 other federal agencies issued a final update to the rule intended to safeguard individuals who participate in cancer and other biomedical research, while making it easier for scientists to conduct lifesaving research on samples provided by these individuals (see sidebar on Revisions to the Common Rule).
information and biospecimens.
Collaborative research being undertaken across multiple institutions to be conducted under a single Institutional Review Board.
Rule, were updated in January 2017 (211).
The updates, which aim to enhance safeguards for individuals who participate in cancer and other biomedical research while making it easier for scientists to conduct lifesaving research on samples provided by these individuals, include provisions that allow for: Most of the updates will become effective in January 2018, except for provisions related to cooperative research, which become effective in January 2020.
