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

Abstract

KeywordsDisability · Precision medicine research · Return of results · Medicalization · Marginalization Abstract Purpose: Returning genetic results to research participants is gaining momentum in the USA. It is believed to be an important step in exploring the impact of efforts to translate findings from research to bedside and public health benefits. Some also hope that this practice will incentivize research participation, especially among people from historically marginalized communities who are commonly underrepresented in research. However, research participants' interest in receiving nongenomic medical and nonmedical results that may emerge from precision medicine research (PMR) is understudied and no study to date has explored the views of people with disabilities about return of genomic and nongenomic results from PMR. Methods: In a national online survey of people with disabilities, participants were queried about their interest in receiving biological, environmental, and lifestyle results from PMR (n = 1,294). Analyses describe findings for all of the participants and comparisons for key demographic characteristics and disability subgroups. Re-sults: The participants expressed high interest in biological and health-related results and less interest in other findings. However, the interest among the study participants was lower than that found in comparable studies of the general population. Moreover, this interest varied significantly across gender, race/ethnicity, and disability subgroups. Possible reasons for these differences are discussed. Conclusion: Insofar as return of results from PMR may impact translational efforts, it is important to better understand the role of sociomedical marginalization in decisions about return of results from PMR and to develop strategies to address existing barriers.

Preferences and Expectations of Feedback of Individual Genetic Research Results in African Genomics: Views of South African Parents of Children With Neurodevelopmental Conditions

“…Our results are consistent with those from international research which found potential or enrolled genomic research participants to have a high interest in receiving individual genetic results for medical, familial, reproductive and/or personal reasons (8,11,14,(24)(25)(26)(27). For example, in Sanderson and colleagues's study, most individuals from the general public wanted to receive individual genetic results for reasons such as, 'to motivate changes in lifestyle, to seek medical intervention, to prepare for the future, for curiosity, interest in genetics, to provide risk information to other family members, as well as for their future potential children and family planning' (11).…”

“…Limited literature documents the views of marginalised groups in research, however there is some evidence suggesting that marginalised groups from the global north have differing views. Most recently, in the US, Sabatello, Zhang, Chen and Appelbaum (2020) found that interest in receiving biological and health-related individual genetic results from precision medicine research varied signi cantly across gender, race/ethnicity and disability groups (14). In their study, most participants reported an interest in receiving genetic risk results about 'a treatable disease', like asthma (68%) and 'an untreatable disease' like Alzheimer's (61%) (14).…”

“…Most recently, in the US, Sabatello, Zhang, Chen and Appelbaum (2020) found that interest in receiving biological and health-related individual genetic results from precision medicine research varied signi cantly across gender, race/ethnicity and disability groups (14). In their study, most participants reported an interest in receiving genetic risk results about 'a treatable disease', like asthma (68%) and 'an untreatable disease' like Alzheimer's (61%) (14). Also in the US, Lakes and colleagues emphasised that perceptions and attitudes about feedback of ndings may be different for individuals of different racial and cultural backgrounds (15) and that individuals view return of results as a complex issue which is compounded by individual and cultural differences.…”

Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis

“…However, studies we include also focused on patients with other diseases or disabilities. These were patients with chronic inflammatory diseases [ 71 ], chronic kidney disease [ 72 ], patients without a diagnosis, but with conditions presumed to be genetic (“diagnostic odyssey”) [ 64 ], patients with a chronic condition such as diabetes mellitus, hypercholesterolemia or hypertension [ 73 ], drug users (heroin, crack, cannabis) [ 74 ], patients with rare diseases [ 75 ] and people with disabilities [ 76 – 78 ]. Some studies did not provide any information about the condition of the patients included in the study.…”

Teenagers and Precision Psychiatry: A Window of Opportunity

“…For instance, studies show that teachers can play as important roles as parents in empowering teenagers to make healthy choices, including in the context of mental health [37,52], but also that existing curricula in schools are not up-to-date with existing knowledge of genomics [53]. As empowerment is a relational process [54], teens' and their families' and communities' experiences of social marginalization (e.g., poverty, which is disproportionally high among underserved racial/ethnic minorities [55]), and bias in health care may affect their engagement in genomic discussions, as found in studies of African American and Latino adults [56][57][58][59][60]. Stigma surrounding psychiatric genetics and teenagers' experiences with psychiatric conditions (personally or through family history) may further affect the degree of empowerment and extent of supports they need.…”