Adopted: May 2003
Updated: April 2020
The National Breast Cancer Coalition (NBCC) has been fighting for improvements in breast cancer research since its inception in 1991. NBCC believes it is critical that research be designed and implemented to effect significant change in how breast cancer is understood, prevented, and treated. There are eight core values for breast cancer research that facilitate progress and improvement for individuals with or at risk for breast cancer. These core values are: integrity, impact, accountability, respect, beneficence, justice, shared decision-making, and flexibility. These values must serve as guiding principles for any breast cancer effort.
NBCC believes that research is the best weapon we have to end breast cancer and recognizes that the financial resources available to complete this task are not infinite. Therefore, it is critical that breast cancer research be as effective as possible. NBCC is dedicated to increasing the effectiveness of breast cancer research by collaborating with investigators and involving knowledgeable breast cancer advocates in all aspects of research design and oversight. NBCC has also made strides towards improving the effectiveness of breast cancer research by bringing together leading thinkers from many fields to create innovative research strategies and pioneer new research models. As a result of these experiences, NBCC has determined that certain values facilitate progress toward ending breast cancer.
Breast cancer research takes place within many disciplines, including, among others, basic science, clinical research, epidemiology, social sciences, and health services research. Generally, research organizations strive for excellence and set priorities in order to make significant progress in their work. However, there are conflicting agendas that can hinder the progress of breast cancer research. The goal of research disciplines should be to save lives. Pursuit of fame and profit can take the emphasis away from achieving genuine advances for women and men. Over-emphasis on research for its own sake limits the avenues for application. Reluctance to include patient and advocate perspectives in research results in the neglect of issues critical to those living with and at risk of, breast cancer and in research that is not as productive or as useful as it could be.
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.
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.
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.
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.
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.
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.
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.
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.
Each of these core values is essential to the research process. Together, they provide a framework for evaluating specific research, and can help us determine whether we are heading in the right direction. Breast cancer patients and their loved ones deserve a research system that is designed and implemented to obtain meaningful results. NBCC’s Core Values for Research should guide us in evaluating and impacting the research process.