Request for Information on Bioethics Issues in Cancer Research and Care

Notice Number: NOT-CA-17-079

Key Dates
Release Date: August 9, 2017

Related Announcements
None

Issued by
National Cancer Institute (NCI)

Purpose

Introduction:

This Request for Information (RFI) Notice solicits input on gaps and opportunities for bioethics research and outreach in the context of cancer research and care.

Bioethics is critical to the mission of National Institutes of Health (NIH).  Ethical questions and challenges are inherent in science, medicine, and healthcare.  Addressing these questions and challenges is vital to the public trust upon which NIH depends.  The National Cancer Institute (NCI), as an NIH institute, has led important initiatives for the ethical conduct of cancer research, hosted meetings focused on ethical issues that have arisen in different aspects of cancer research, and funded bioethics research projects that have led to high-impact discoveries for cancer research and clinical practice.  These activities demonstrate interest within NCI in addressing the ethical issues in different types of cancer research and throughout the cancer control continuum.

As the NCI pushes forward with research initiatives such as the Precision Medicine Initiative, the Beau Biden Cancer Moonshot, or addressing disparities in cancer, there is a recognition that ethical issues will need to be addressed in order for these efforts to be successful.

Background:

In 2015, the Think Tank on Bioethics Research at the National Cancer Institute (NCI) began to lay the foundation for discussions at NCI on bioethics, including needs and opportunities for bioethics research.  A Cancer and Bioethics Working Group comprised of NCI staff members was formed at the NCI in 2016; its goals are to foster bioethics/ELSI (Ethical, Legal, and Social Implications) research, and to coordinate outreach activities to educate members of the cancer community, including researchers, practitioners, and other involved/interested persons, on bioethics/ELSI issues.  To help better realize these goals, the members seek input from community members, patients, cancer researchers, physicians, other health practitioners, bioethicists, advocates, and others to help identify bioethics areas clearly relevant to cancer but in need of further development, as well as bioethics areas which are ready for translation in a cancer context.

Information Requested:

With this RFI Notice, the NCI invites all stakeholders with interests in bioethics and cancer research, clinical care, and/or public health to provide information on any of the following.

1. Gaps: Ethical issues/areas that are clearly relevant to cancer, but have not been sufficiently addressed in cancer settings.  Specify the categories, types, disciplines, and/or phases of cancer research (e.g., basic, clinical trial, population-based, translational) or cancer clinical and public health practice (e.g., prevention, treatment, survivorship, end-of-life) to which the issue is most relevant.  Clear illustrative case examples of the issue and the cancer setting would be informative, along with citations if available.

2. Opportunities: Ethical issues/areas for which there is established bioethics scholarship in cancer research, clinical care, and/or public health settings that are ready for translation, dissemination, and/or implementation.  Specify cancer settings that would benefit most by incorporating identified practices.  Citations of reported/published work would be informative.

3. Collaboration: Approaches for enhancing collaborations to conduct bioethics research/translation in the context of cancer research, clinical care, or public health.  Examples of models of research partnerships, or tools that can support trustworthy collaboration, would be informative.

4. Outreach: Timely ethical issues in cancer, and stakeholders who would benefit most from learning more about this issue/area.

Examples of areas/issues of interest include, but are not limited to ethical issues raised by cancer-focused research on: biomarkers; disparities; screening; genomics research within clinical trials; new research designs, e.g., cluster-randomized trials; and participant engagement in research.

5. Other: NCI also welcomes any additional input not covered by the topics above, but that would help further our goals regarding bioethics and cancer.

A broader list of issues within different cancer contexts is available at https://epi.grants.cancer.gov/bioethics-cancer-research.html.  More specific input within a broad issue is also informative.

Stakeholder Perspective:

Please feel free to identify the perspective(s) you represent by including any of the below that apply.  NCI would like to ensure that broad range of perspectives is represented:

Cancer researcher (including any and all members of research team)
Cancer care provider
Cancer and genetics provider
Public health practitioner
Bioethics researcher
Research ethics practitioner (e.g., IRB member, human subjects protection institutional official)
Clinical ethics practitioner (e.g., clinical ethics consultant)
Social/behavioral science researcher
Cancer patient / Survivor
Patient advocate / Advocacy group member
Cancer family member / Caregiver
Community member
Insurers / Payers
Other – specify stakeholder role

Submitting a Response:

All responses must be submitted by October 6, 2017.  Responses should be submitted using one of the following:

Email
To: cancerandbioethics@nih.gov

U.S. Postal Service or other delivery service
To: Charlisse Caga-anan
National Cancer Institute
DCCPS/EGRP/Genomic Epidemiology Branch
9609 Medical Center Drive, Room 4E236
Bethesda, MD 20892-9763 (or Rockville, MD 20850 for express delivery)

Please include the RFI Notice number (NOT-CA-17-079) in the subject line of your email or letter.

Responses to this RFI are voluntary.  The collected information will be reviewed by NIH staff.  All individual responses will remain confidential.  Any identifiers (e.g., names, institutions, e-mail addresses, etc.) will be removed when responses are compiled. Processed, anonymized results may be shared internally with other NIH staff or any members of scientific working groups convened by the NCI, may be used in reports, or may be posted on an NCI public website, as appropriate.

Respondents will receive an e-mail confirmation acknowledging receipt of their response but will not receive any individualized feedback

Inquiries

Please direct all inquiries to:

Charlisse Caga-anan
National Cancer Institute (NCI)
Telephone: 240-276-6738
Email: charlisse.caga-anan@nih.gov

Carol Weil
National Cancer Institute (NCI)
Telephone: 240-276-5975
Email: carol.weil@nih.gov

Kim Witherspoon
National Cancer Institute (NCI)
Telephone: 240-276-6141
Email: withersk@mail.nih.gov