大力宣传,却很少得到认可:黑人患者在精准医疗领域的隐性工作。

IF 1.5 Q4 GENETICS & HEREDITY Journal of Community Genetics Pub Date : 2023-12-01 Epub Date: 2023-09-29 DOI:10.1007/s12687-023-00673-9
Lynette Hammond Gerido, Kenneth Resnicow, Elena M Stoffel, Tiah Tomlin, Robert Cook-Deegan, Melissa Cline, Amy Coffin, Jill Holdren, Mary Anderlik Majumder, Zhe He
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引用次数: 0

摘要

随着具有成本效益的下一代基因组测序的迅速发展,呼吁将黑人更多地纳入基因组研究、政策和实践,对于将基因组科学有效转化为精准人群健康和医学是必要的。采用基于社区的参与性混合方法研究设计,我们开发了一项半结构化调查,并将其分发给三个癌症倡导组织。在81名调查对象中,49人(60%)自我认同为黑人,26人(32%)表示曾被诊断为癌症。黑人参与者对基因检测表达的担忧在可以通过基因咨询解决的担忧(24%)和对随后使用其基因数据的担忧(27%)之间平均分布。患者权益倡导者在社区经验方面为受访者关注的情境化做出了贡献。尽管许多黑人社区并不总是能够获得基因咨询服务和管理基因组数据使用的政策,但我们研究团队中的倡导者为讨论受访者的担忧与倡导者在填补基因咨询和数据管理方面的空白方面所起的作用之间的交叉点提供了一座桥梁。黑人患者表达的担忧强调了所有患者对接受教育、参与研究以及保证基因数据的使用和处理的共同需求。癌症黑人患者加入了以患者为主导的努力,以克服癌症护理中的系统性不公平,通过代表改善他们的健康结果。他们的努力往往被持续存在的健康差距的无情负担所掩盖。未来的研究应该支持他们的隐藏工作,以此来减少障碍,提高基因组数据库的代表性。
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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.

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来源期刊
Journal of Community Genetics
Journal of Community Genetics GENETICS & HEREDITY-
CiteScore
3.30
自引率
5.30%
发文量
54
期刊介绍: The Journal of Community Genetics is an international forum for research in the ever-expanding field of community genetics, the art and science of applying medical genetics to human communities for the benefit of their individuals. Community genetics comprises all activities which identify persons at increased genetic risk and has an interest in assessing this risk, in order to enable those at risk to make informed decisions. Community genetics services thus encompass such activities as genetic screening, registration of genetic conditions in the population, routine preconceptional and prenatal genetic consultations, public education on genetic issues, and public debate on related ethical issues. The Journal of Community Genetics has a multidisciplinary scope. It covers medical genetics, epidemiology, genetics in primary care, public health aspects of genetics, and ethical, legal, social and economic issues. Its intention is to serve as a forum for community genetics worldwide, with a focus on low- and middle-income countries. The journal features original research papers, reviews, short communications, program reports, news, and correspondence. Program reports describe illustrative projects in the field of community genetics, e.g., design and progress of an educational program or the protocol and achievement of a gene bank. Case reports describing individual patients are not accepted.
期刊最新文献
Key contextual factors involved with participation in medical and genomic screening and research for African American and White Americans: a qualitative inquiry. Factors influencing pregnant women's decision to accept or decline prenatal screening and diagnosis - a qualitative study. Acceptability of dried blood spot collection by primary caregivers of Filipino patients with maple syrup urine disease (MSUD) and phenylketonuria (PKU). Opportunities and challenges for identifying undiagnosed Rare Disease patients through analysis of primary care records: long QT syndrome as a test case. Feasibility of an environmental scan-based approach to collecting information about factors impacting cancer genetics services in Latin American countries.
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