A comparative study of patients’ perceptions of genetic and genomic medicine services in California and Malaysia

Qian, Emily; Thong, Meow‐Keong; Flodman, Pamela; Gargus, J. Jay

doi:10.1007/s12687-018-0399-8

Cited by 6 publications

(6 citation statements)

References 35 publications

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“…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.…”

Section: Resultsmentioning

confidence: 99%

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

2021

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Background Precision medicine development is driven by the possibilities of next generation sequencing, information technology and artificial intelligence and thus, raises a number of ethical questions. Empirical studies have investigated such issues from the perspectives of health care professionals, researchers and patients. We synthesize the results from these studies in this review. Methods We used a systematic strategy to search, screen and assess the literature for eligibility related to our research question. The initial search for empirical studies in five data bases provided 665 different records and we selected 92 of these publications for inclusion in this review. Data were extracted in a spreadsheet and categorized into different topics representing the views on ethical issues in precision medicine. Results Many patients and professionals expect high benefits from precision medicine and have a positive attitude towards it. However, patients and professionals also perceive some risks. Commonly perceived risks include: lack of evidence for accuracy of tests and efficacy of treatments; limited knowledge of patients, which makes informed consent more difficult; possible unavailability of access to precision medicine for underprivileged people and ethnic minorities; misuse of data by insurance companies and employers, potential of racial stigmatization due to genetic information; unwanted communication of incidental findings; changes in doctor-patient-relationship through focusing on data; and the problem that patients could feel under pressure to optimize their health. Conclusions National legislation and guidelines already minimize many risks associated with precision medicine. However, from our perspective some problems require more attention. Should hopes for precision medicine’s benefits be fulfilled, then the ethical principle of justice would require an unlimited access to precision medicine for all people. The potential for autonomous patients’ decisions must be greatly enhanced by improvements in patient education. Harm from test results must be avoided in any case by the highest possible data security level and communication guidelines. Changes in the doctor-patient relationship and the impact of precision medicine on the quality of life should be further investigated. Additionally, the cost-effectiveness of precision medicine should be further examined, in order to avoid malinvestment.

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Section: Resultsmentioning

confidence: 99%

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

2021

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“…The implementation of such policies should be in line with consumers' benefits, such as their eligibility for medical and insurance coverage (Chong et al, 2018 ). Moreover, a recent study highlighted that the lack of knowledge of genetic testing among healthcare providers was the most significant difficulty faced in California and Malaysia (Amini et al, 2015 ; Qian et al, 2019 ). A similar trend was also observed in the Netherlands (Baars et al, 2005 ) and Italy (Marzuillo et al, 2013 ).…”

Section: Discussionmentioning

confidence: 99%

“…The recognition of Clinical Genetics as a subspecialty and increased funding for genetics services also contributed to the growth of genetic testing in Malaysia. In addition, a number of survey studies were conducted to examine the level of knowledge, perception, or awareness of patients or young Malaysians (Al-Naggar and Osman, 2013 ; Mustapa et al, 2019 ; Qian et al, 2019 ) or physicians (Amini et al, 2015 ) regarding genetic risk of inheritable disorders in Malaysia. Meanwhile, similar surveys were reported to conclude the views of undergraduates on genetic testing (Sim and Ting, 2018 ; Sulaiman and Zainuddin, 2018 ).…”

Section: Introductionmentioning

confidence: 99%

Knowledge, Awareness, and Perception of Genetic Testing for Hereditary Disorders Among Malaysians in Klang Valley

Chin

Tham

2020

Front. Genet.

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Genetic testing aids patients in making important decisions in the prevention, treatment, or early detection of hereditary disorders. Low awareness of the importance of genetic testing contributes to the increase in the incidence of hereditary disorders. This study aims to explore the knowledge, awareness, and perception of genetic testing for hereditary disorders among local residents of the Klang Valley, Malaysia, and the potential variables that influence their understanding of genetic testing. A survey was conducted in different municipalities of the Klang Valley through self-administered questionnaire assessing the public's knowledge, awareness, and perception of genetic testing. Overall, the results revealed adequate knowledge and positive awareness of genetic testing, in which both were influenced by the respondent's educational level (P < 0.001), field of study (P < 0.001), and status of heard or unheard of genetic testing (P < 0.001). The perception of genetic testing was generally positive and influenced by the respondent's differences in age (P < 0.016), educational level (P < 0.001), field of study (P < 0.001), and status of heard or unheard of genetic testing (P < 0.001). Although positive responses were obtained, ~20.2% of the respondents had never heard of genetic testing. Of the respondents, 24.5% were unwilling to undergo genetic testing, with 25.1% believing that genetic testing tampers with nature and 18% believing that it opposes religion and their beliefs. Such attitude calls for the need to conduct programs to eliminate any misconception, as well as to educate the public to lessen any perceived misunderstanding of the concepts of genetic testing.

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“…In previous studies, patient barriers to GC attendance were cost, emotional concerns, family concerns and low perceived personal relevance [ 47 – 49 ]. The cost of genetic testing for hereditary cancer conditions in Singapore is at present an ”out-of-pocket” [ 49 ] expense and has been reported as a barrier to referral and uptake [ 46 , 50 ]. In a local study, it was found that subsidizing the cost of genetic testing resulted in an increase in uptake rate and could be cost-saving [ 49 ].…”

Section: Discussionmentioning

confidence: 99%

Clinical implementation of an oncology‐specific family health history risk assessment tool

Fung

Myers

et al. 2021

Hered Cancer Clin Pract

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Background The presence of hereditary cancer syndromes in cancer patients can have an impact on current clinical care and post-treatment prevention and surveillance measures. Several barriers inhibit identification of hereditary cancer syndromes in routine practice. This paper describes the impact of using a patient-facing family health history risk assessment platform on the identification and referral of breast cancer patients to genetic counselling services. Methods This was a hybrid implementation-effectiveness study completed in breast cancer clinics. English-literate patients not previously referred for genetic counselling and/or gone through genetic testing were offered enrollment. Consented participants were provided educational materials on family health history collection, entered their family health history into the platform and completed a satisfaction survey. Upon completion, participants and their clinicians were given personalized risk reports. Chart abstraction was done to identify actions taken by patients, providers and genetic counsellors. Results Of 195 patients approached, 102 consented and completed the study (mean age 55.7, 100 % women). Sixty-six (65 %) met guideline criteria for genetic counseling of which 24 (36 %) were referred for genetic counseling. Of those referred, 13 (54 %) participants attended and eight (33 %) completed genetic testing. On multivariate logistic regression, referral was not associated with age, cancer stage, or race but was associated with clinical provider (p = 0.041). Most providers (71 %) had higher referral rates during the study compared to prior. The majority of participants found the experience useful (84 %), were more aware of their health risks (83 %), and were likely to recommend using a patient-facing platform to others (69 %). Conclusions 65 % of patients attending breast cancer clinics in this study are at-risk for hereditary conditions based on current guidelines. Using a patient-facing risk assessment platform enhances the ability to identify these patients systematically and with widespread acceptability and recognized value by patients. As only a third of at-risk participants received referrals for genetic counseling, further understanding barriers to referral is needed to optimize hereditary risk assessment in oncology practices. Trial Registration NIH Clinical Trials registry, NCT04639934. Registered Nov 23, 2020 -- Retrospectively registered.

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A comparative study of patients’ perceptions of genetic and genomic medicine services in California and Malaysia

Cited by 6 publications

References 35 publications

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

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

Knowledge, Awareness, and Perception of Genetic Testing for Hereditary Disorders Among Malaysians in Klang Valley

Clinical implementation of an oncology‐specific family health history risk assessment tool

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