Understanding Disparities in Access to Genomic Medicine Proceedings of a Workshop (2018) / Chapter Skim
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6 Considering Unmet Needs to Alleviate Disparities in Genomic Medicine
6 Considering Unmet Needs to Alleviate Disparities in Genomic Medicine
Pages 61-70
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From page 61... ...
This session also explored gaps in policy, knowledge, and institutional resources that could be addressed to ensure that genomic medicine is equitably provided across all populations. OVERCOMING CHALLENGES TO INCREASE ACCESS TO GENETICS AND GENOMICS Cultural Factors That Influence a Conversation on Genetics There are significant ethical, legal, and social issues at play related to health care disparities in genomic medicine, Tuckson said, and the implications for an already suboptimal and rapidly evolving health care delivery system are substantial.
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From page 62... ...
Furthermore, events such as the recent use of DNA profiles from ancestry websites to help make arrests in cold cases2 have only increased the level of distrust in many communities of color regarding access to genetic information, and U.S. judges have not found genetic information to be protected under the Fourth Amendment against unreasonable search and seizure.3 Tuckson recommended supporting the recent call for legislators to set limits and establish protections regarding law enforcement's use of genetic genealogy searches (Ram et al., 2018)
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From page 63... ...
Not all students are being taught statistics and probabilistic decision making, skills that are relevant to daily life, nor are all of them learning about genetics and its relationship to society and the environment, uckson T said. The treatment of genetics in state education standards across the nation can have significant implications for how Americans understand concepts such as gene expression and regulation and genetic variation (Dougherty et al., 2011)
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From page 64... ...
Improving Health Care Delivery Through a Precision Health Approach A significant challenge with incorporating genomics into health care is that the current system is not efficient and will require improved delivery to be effective, Tuckson said. From an economic standpoint, adding genomics into the mix could be challenging for health care systems, particularly when the only new money coming into health care systems is coming from individuals rather than local, state, or federal budgets.
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From page 65... ...
. Speakers highlighted several key opportunity areas related to reducing health care disparities in genomics, including community engagement and education, evidence-based population health approaches, and genetics workforce and training.
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From page 66... ...
How, the participant asked, can the Roundtable work with that program to educate the public about informed consent, data security, and the aspects of communication to enable All of Us to truly represent the population of the nation? At the macro level, the research community needs to work with the Urban League, the NAACP, African American and Hispanic churches, and similar organizations that represent minorities, Tuckson said.
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From page 67... ...
" a workshop participant asked. There is definitely a need, Taylor said, for more help building and maintaining relationships in the community and providing feedback to community members and community partners.
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From page 68... ...
An additional opportunity could be increasing the diversity of the genomics workforce, perhaps by recruiting people from the community who can learn and receive training to become health care professionals. NHGRI's Clinical Sequencing Evidence- Generating Research consortium plans to take two online tools and use them to screen patients and offer testing in communities in which there have been detailed conversations to build trust and reduce anxiety over genetic testing and how the results will be used.
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From page 69... ...
Genetics Workforce and Training Given the decreasing cost of genome sequencing and the rise in directto-consumer testing, an additional challenge in reducing health care disparities in genomics may be workforce and training issues. The Roundtable could look at how to return results to patients through mechanisms other than via direct one-on-one encounters with genetic counselors, Skaar said.
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From page 70... ...
One potential opportunity could be to develop demonstration projects within institutions to show that genomics can add value, they said, referring to the efforts and programs of Anderson, Armstrong, Malani, and others who spoke at the workshop. "It is not acceptable that we are not delivering [care]
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