Big advocacy, little recognition: the hidden work of Black patients in precision medicine.

As cost-effective next-generation genome sequencing rapidly develops, calls for greater inclusion of Black people in genomic research, policy, and practice are necessary for effective translation of genomic science into precision population health and medicine. Employing a community-based participatory mixed methods research design, we developed a semi-structured survey that was disseminated to three cancer advocacy organizations. Of the 81 survey respondents 49 (60%) self-identified as Black, and 26 (32%) indicated a prior breast cancer diagnosis. Black participants' expressed concerns about genetic testing were evenly distributed between concerns that could be addressed through genetic counseling (24%) and concerns about subsequent use of their genetic data (27%). Patient advocates contributed to contextualization of respondent concerns in terms of community experiences. Although genetic counseling services and policies governing genomic data use are not always accessible to many Black communities, advocates on our research team provided a bridge to discussion of the intersection between respondent concerns and the roles advocates play in filling gaps in access to genetic counseling and data governance. Concerns expressed by Black patients underscore a shared need among all patients for access to education, inclusion in research, and assurances regarding the use and handling of genetic data. Black cancer patients have joined in patient-led efforts to overcome systemic inequities in cancer care to improve their health outcomes through representation. Often their efforts are overshadowed by a relentless burden of continued health disparities. Future research should support their hidden work as a means to reduce barriers and improve representation in genomic databases.

Perspectives of People With Cancer or Hereditary Cancer Risk on the Use and Value of Online Peer Support.

Purpose: People with cancer routinely seek information and support in peer groups online. While peer communities constitute a major component of the health care landscape, they exist in isolation from clinical and research institutions. This study aimed to explore how and why cancer patients utilize online peer support groups and how they might be improved. Methods: A convenience sample of members of 6 closed Facebook cancer peer support groups (n=291) participated in an online needs assessment survey. We further conducted semi-structured interviews with 14 members and 6 moderator-patients, hand-coding the free-text responses and interview transcripts. Results: Group participation was largely motivated by the desire to exchange information (79%) and to connect with others sharing the same condition (76%). Among study participants, 40% indicated they did not get information or support from any other online or offline organizations, 60% indicated they had few concerns with Facebook peer support groups, 84% indicated it was at least somewhat important that their health information and posts remain private, and 75% desired more input from experts in order to access evidence-based information and curb misinformation. About half wanted more group moderation, and moderators themselves expressed an urgent need for training and support. Conclusions: While online peer groups are a commonly utilized care component for many people with cancer or hereditary cancer risk and serve as a primary source of condition information, many participants desired more expert involvement in and moderation of groups. Privacy and security of health information was another key need expressed.

Big Advocacy, Little Recognition: The Hidden Work of Black Patients in Precision Medicine.

Public health genomics prioritizes effective and ethical translation of genomic science into population health precision medicine. With the rapid development of cost-effective, next-generation genome sequencing, calls are growing for greater inclusion of Black people in genomic research, policy, and practice. Genetic testing is often the first step in precision medicine. This study explores racial differences in patient concerns about genetic testing for hereditary breast cancer. Employing a community-based participatory mixed methods research design, we developed a semi-structured survey that was shared broadly. There were 81 survey respondents, of which, forty-nine (60%) self-identified as Black, twenty-six (32%) indicated they had a history of a breast cancer diagnosis, or had received BRCA genetic testing. Black participants who expressed concerns about genetic testing were fairly equally distributed between concerns that could be addressed with genetic counseling (24%) and concerns about the subsequent use of their genetic data (27%). The concerns expressed by the participants in our study underscore a need for transparent disclosures and assurances regarding the use and handling of genetic data. These findings should be viewed in context with patient-led efforts to overcome systemic inequities in cancer care, as Black cancer patients have joined forces with advocates and researchers to develop protective health data initiatives and to improve their representation in genomic datasets. Future research should prioritize the information needs and concerns of Black cancer patients. Interventions should be developed to support their hidden work as a means to reduce barriers and improve representation in precision medicine.

Environment and health in the twenty-first century.

There are major challenges facing the countries in the Pacific Basin. These include issues of hazardous waste management and the consequent adverse effects of hazardous wastes on human health, the potential disruption of our whole way of life as a consequence of global climate change, and the increasing problem on human health of air pollution and the effects of breathing polluted air. These issues and others were the focus of the 12th meeting of the Pacific Basin Consortium for Environment and Health Sciences, held in Beijing in late 2007. This volume is a collection of papers presented at that meeting, and this introductory chapter provides some perspective on three of the major issues that are of concern in all of the countries in this region. This meeting provided an opportunity for Chinese scientists and those from other countries in the Pacific Basin to share perspectives and possible solutions with others from the international community, and these various approaches are reflected in these proceedings.