Core Values for Breast Cancer Research

Core Values

NBCC believes that there are eight overlapping core values, which should be guiding principles for breast cancer research and benchmarks for evaluating any breast cancer effort. NBCC’s Core Values for Research are Integrity, Impact, Accountability, Respect, Beneficence, Justice, Shared decision-making, and Flexibility. These values are applicable across disciplines and will transcend change as breast cancer research evolves in the future. Research incorporating all of these values will result in true progress for individuals with and at risk of breast cancer.

Integrity
Breast cancer research must be conducted with integrity. The institutions and researchers involved in the study must ultimately be motivated by the pursuit of knowledge about how to save lives in breast cancer, rather than personal or professional gain. They must emphasize high quality methods, accurate and detailed record keeping, and honest publication of results, regardless of the outcome for themselves. They must give suitable credit to all contributors and publicly disclose all relevant relationships and conflicts of interest. Institutional guidelines and procedures must be in place to define and address research misconduct.

Impact
Research must have a meaningful impact on how breast cancer is understood, prevented, or treated. Studies must be conceived, designed, and conducted to answer novel questions and should have a high likelihood of eventually improving or extending the lives of individuals with or at risk for breast cancer. The investigators must strive to be innovative, leaping ahead by using new study paradigms and techniques. Multidisciplinary approaches should be used to increase the impact of studies by creating new ways of asking questions and applying information.

Accountability
Funding agencies, organizations, and investigators involved in breast cancer research must be accountable to those affected by breast cancer and to the public. They must put the well-being of the breast cancer community first when setting priorities and allocating resources, and maintain an environment of openness to the breast cancer community and the public. They must report all research findings, even those that result in negative findings or do not support the drug, device, or other intervention being considered. Their decision-making processes must be transparent, and they must share information relating to the study with stakeholders in a timely, complete, and comprehensible manner. Researchers must share their methods and data widely, so that it can be publicly critiqued and shared with many minds that can make practical use of the information.

Respect
Breast cancer research must be conducted with the highest respect for individuals with or at risk for breast cancer. Investigators must recognize the dignity and worth of all persons affected by the disease throughout the research process. When data collection requires human participants, the first priority must be to protect individual rights, health, and safety through meaningful consent, privacy, and thorough oversight. Research organizations must provide clear and complete information about the intervention being studied, recognizing that it is impossible for patients to give truly informed consent without awareness of potential risks and possible benefits.

Beneficence
Research involving human participants must adhere to the ethical principle of beneficence. In research, this means there is an obligation first, to do no harm, and second, to maximize possible benefits and minimize possible harms. Study design, enrollment, and conduct must ensure the well-being of all research participants by maximizing benefit and minimizing harm.

Justice
Research involving human participants must also adhere to the ethical principle of justice. Selection of research participants must be scrutinized to ensure that no class of participants is systematically selected simply because of easy availability, their compromised position, or their manipulability, but rather, only for reasons directly related to the problem being studied. Nor should any class or potential participants be eliminated from the study for reasons not related to the problem being studied. Researchers must identify and address disparities within the general population during the selection and enrollment of study participants. At the conclusion of the study, there should be equity in access to goods and services that are available due to the conduct or outcome of their research.

Shared Decision Making
Breast cancer advocates and researchers must participate in shared decision making. Informed advocates must make meaningful contributions to all aspects of research conduct and oversight, including decisions about funding, research topics, and study design. Investigators must recognize the contributions that researchers from other disciplines make to the discovery process, and there must be meaningful involvement of these individuals in research design and oversight. Shared decision-making binds other core values together, facilitating research programs characterized by integrity, impact, accountability, respect, beneficence, justice, and flexibility.

Flexibility
The institutions and programs that fund and regulate research must be flexible and respond to the changing research environment. Investigators must train young researchers to be dynamic, to take research risks, and to evolve with the changing needs of the breast cancer population. The research community must encourage these attitudes by providing funding opportunities and professional support to unique new thinkers.