Literature DB >> 30539340

Cultivating inclusivity in precision medicine research: disability, diversity, and cultural competence.

Maya Sabatello1,2.   

Abstract

Cultural competence is increasingly viewed as key for the inclusion of diverse populations in precision medicine research (PMR) in the USA. Precision medicine researchers and personnel are thus increasingly expected to undergo cultural competency trainings and to engage with relevant racial/ethnic communities to ensure that all research components are culturally and linguistically sensitive to these communities. However, the need for PMR enterprises to ensure competence with and understanding of disability rights, history, and needs (hereinafter disability culture competency) have not received attention. This article discusses the importance of disability inclusivity in PMR and the construct-and challenges-of disability as a cultural community. Reviewing and extrapolating from studies in healthcare settings, the article considers three interrelated issues that are likely to impact disability inclusivity in PMR: disability accessibility and accommodation; disability stigma and unconsious bias; and disability language and communication. Next, disability competency trainings that were developed in healthcare settings are surveyed and their applicability for PMR is discussed. The arguments advanced are that disability culture competency among precision medicine researchers, personnel, and oversight committees is essential to upholding the welfare and rights of human subjects with disabilities in PMR; that engagement with disability communities is imperative for this endeavor; and that such knowledge of disability culture is crucial for cultivating inclusivity of people with different (dis)abilities in PMR.

Entities:  

Keywords:  Cultural competence; Disability; Health disparities; Precision medicine research

Year:  2018        PMID: 30539340      PMCID: PMC6591334          DOI: 10.1007/s12687-018-0402-4

Source DB:  PubMed          Journal:  J Community Genet        ISSN: 1868-310X


  6 in total

1.  People With Disabilities in COVID-19: Fixing Our Priorities.

Authors:  Maya Sabatello; Scott D Landes; Katherine E McDonald
Journal:  Am J Bioeth       Date:  2020-07       Impact factor: 11.229

2.  In Different Voices: The Views of People with Disabilities about Return of Results from Precision Medicine Research.

Authors:  Maya Sabatello; Yuan Zhang; Ying Chen; Paul S Appelbaum
Journal:  Public Health Genomics       Date:  2020-04-15       Impact factor: 2.000

3.  Challenges in Diversity, Equity, and Inclusion in Research and Clinical Oncology.

Authors:  Wafik S El-Deiry; Giuseppe Giaccone
Journal:  Front Oncol       Date:  2021-03-24       Impact factor: 6.244

4.  Delivering disability competencies of MCI's revised competency based curriculum at a medical university in North Karnataka.

Authors:  Archana Dambal; Hemamalini Gururaj; Kiran R Aithal; M V Kalasuramath Dharwad; Radhika Sherkhane; Savitri Siddanagoudra; Deepak R Kanabur; Sameer Ahmed Mulla
Journal:  Med J Armed Forces India       Date:  2021-02-02

Review 5.  Inclusion of People with Disabilities in Research to Improve Medication Adherence: A Systematic Review.

Authors:  Jaclyn K Schwartz; Elizabeth Unni
Journal:  Patient Prefer Adherence       Date:  2021-07-26       Impact factor: 2.711

6.  Project Inclusive Genetics: Exploring the impact of patient-centered counseling training on physical disability bias in the prenatal setting.

Authors:  Emma Vaimberg; Lindsay Demers; Eric Ford; Maya Sabatello; Blair Stevens; Shoumita Dasgupta
Journal:  PLoS One       Date:  2021-08-05       Impact factor: 3.240

  6 in total

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