Using Genetic Technologies To Reduce, Rather Than Widen, Health Disparities

Smith, Caren E.; Fullerton, Stephanie M.; Dookeran, Keith A.; Hampel, Heather; Tin, Adrienne; Maruthur, Nisa M.; Schisler, Jonathan C.; Henderson, Jeffrey A.; Tucker, Katherine L.; Ordovás, José M.

doi:10.1377/hlthaff.2015.1476

Cited by 74 publications

(53 citation statements)

References 48 publications

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“…However, the mechanisms by which APOL1 genotypes increase the risk of kidney disease remains poorly understood, and thus treatments that specifically target individuals with highrisk genotypes have been slow to develop. 49 Therefore, potential disparities in genetic testing may not only depend on socioeconomic status, but also on differing clinician and patient preferences, poor characterization of genetic variants and insufficient mechanisms to manage vulnerable patient populations. 20,43,44,49,50 Thus, as with BRCA testing, the prevalence of disease in different population groups is an important factor to consider when analyzing disparities.…”

Section: Discussionmentioning

confidence: 99%

Trends in BRCA testing and socioeconomic deprivation

et al. 2019

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BRCA testing received much publicity following Angelina Jolie's editorial 'My Medical Choice' in May 2013 and updated NICE clinical guidance (CG164) in June 2013. We assessed the effect of these two concurrent events on BRCA testing in one UK catchment area and relate this to socioeconomic deprivation. A database of 1393 patients who received BRCA testing was collated. This included individuals with breast/ovarian cancer, and those unaffected by cancer, where a relative has a ≥10% probability of carrying a BRCA variant which affects function. A segmented regression was conducted to estimate changes in testing. To examine the relative distribution of testing by deprivation, the deprivation status of patients who received testing was examined.Between April 2010-March 2017, testing increased 11-fold and there was an 84% increase (P=0.006) in BRCA1/2 testing in the month following both publications. In the pre-publication period, there was no statistically significant difference in testing between advantaged and disadvantaged areas (OR 1.21 95% CI 0.99-1.48; P=0.06). In the post-publication period helped by a larger sample size, the difference was statistically significant (OR 1.18 95% CI 1.08-1.29; P=0.0002) and of a similar magnitude to the pre-publication period. Testing increased following Jolie's editorial and NICE guidance update. However further research is needed to examine differences in testing by deprivation group which adjusts for confounders.

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Section: Discussionmentioning

confidence: 99%

Trends in BRCA testing and socioeconomic deprivation

et al. 2019

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“…Although precision medicine breakthroughs offer the potential to reduce disease burden and mortality, there is also the potential for them to widen existing racial and ethnic health disparities (Smith et al, ). Racial and ethnic health disparities in the US have been linked to unequal healthcare access and social determinants of health (SDH), such as discrimination, residential segregation, low education, poverty, and income inequality (Galea, Tracy, Hoggatt, Dimaggio, & Karpati, ; Institute of Medicine (US) Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care, ; ; ; Moy & Freeman, ).…”

Section: Introductionmentioning

confidence: 99%

Racial and ethnic differences in knowledge and attitudes about genetic testing in the US: Systematic review

Canedo

Miller

Myers

et al. 2019

Journal of Genetic Counseling

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Precision medicine has grown over the past 20 years with the availability of genetic tests and has changed the one‐size‐fits‐all paradigm in medicine. Precision medicine innovations, such as newly available genetic tests, could potentially widen racial and ethnic disparities if access to them is unequal and if interest to use them differs across groups. The objective of this systematic review was to synthesize existing evidence on racial and ethnic differences in knowledge of and attitudes toward genetic testing among adult patients and the general public in the US, focusing on research about the use of genetic testing in general, not disease‐specific tests. Twelve articles published in 1997–2017 met inclusion and exclusion criteria, with 10 including knowledge variables and seven including attitude variables. Studies found consistent patterns of lower awareness of genetic testing in general among non‐Whites compared to Whites, lower factual knowledge scores among Blacks and Hispanics/Latinos, and mixed findings of differences in awareness of direct‐to‐consumer (DTC) genetic testing or the term precision medicine. Blacks, Hispanics/Latinos, and non‐Whites generally had more concerns about genetic testing than Whites. The findings suggest that patients and the general public need access to culturally appropriate educational material about the use of genetic testing in precision medicine.

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“…14 Moreover, individuals with non-European ancestries are underrepresented in genetic databases, creating incomplete genetic profiles and limiting the ability to apply genetic knowledge toward advancing treatment options. 15 Historical anecdotes of medical mistrust still permeate underresourced communities, which may contribute to the avoidance of cancer screening and reduced participation in clinical trials. African Americans, in particular, are still acutely aware of medical ethics violations, such as the Tuskegee Syphilis Experiment.…”

Section: Panel Discussion: a Viewpoint On Cancer Equity From Patient mentioning

confidence: 99%

Advocating for Equity in Cancer Care

McCanney¹,

Johnson²,

Bandini³

et al. 2019

Journal of the National Comprehensive Cancer Network

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Demographic factors such as race, socioeconomic status, gender identity, area of residence, native language, and cultural barriers have an effect on outcomes in cancer care. To identify unmet needs, challenges, and opportunities in achieving high-quality, patient-centered cancer care for all, NCCN conducted a yearlong environmental scan, which involved stakeholder meetings with patients and patient advocacy groups to discuss these topics. The findings from this scan informed the corresponding NCCN Patient Advocacy Summit: Advocating for Equity in Cancer Care, held in Washington, DC, on December 10, 2018. In addition to the many patient advocacy groups, the summit featured a number of other stakeholders that advocate for equity in cancer care. This article encapsulates the findings of the environmental scan and the discussion from the NCCN Patient Advocacy Summit.

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Using Genetic Technologies To Reduce, Rather Than Widen, Health Disparities

Cited by 74 publications

References 48 publications

Trends in BRCA testing and socioeconomic deprivation

Trends in BRCA testing and socioeconomic deprivation

Racial and ethnic differences in knowledge and attitudes about genetic testing in the US: Systematic review

Advocating for Equity in Cancer Care

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