Access to genetic testing and genetic counseling in vulnerable populations: the d/Deaf and hard of hearing population

Cooke-Hubley, Sandra; Maddalena, Victor

doi:10.1007/s12687-011-0047-z

Cited by 4 publications

(3 citation statements)

References 44 publications

(55 reference statements)

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“…Each vulnerable group faces vulnerability in different ways and for different reasons, and "therefore should be examined individually to determine the factors that contribute to their vulnerability" (Cooke-Hubley & Maddalena 2011, 118). Cooke-Hubley and Maddalena (2011) consider deaf people to constitute a vulnerable group because there are general reports of them having poorer health status than the hearing population (Emond et al 2015;Rogers et al 2024).…”

Section: Introductionmentioning

confidence: 99%

“I faced so many barriers”: Access to support for deaf female survivors of domestic violence in the UK

Napier,

Clark,

Leeson

et al. 2024

Journ LRM

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This article examines the potential vulnerability of deaf female British Sign Language (BSL) signers who experience domestic violence (DV) in reporting DV and accessing information and communication support. Based on online semi-structured interviews with eight deaf women in the UK, their perceptions of the factors that contribute to creating barriers in gaining adequate access and support are discussed. We present findings that concentrate around seven key barriers identified by the interviewees including: (i) access to interpreting; (ii) lack of information in BSL; (iii) lack of deaf cultural awareness; (iv) needs for on-going support; (v) deaf-specific services; (vi) training/education needs; and (vii) recognition of diversity. In considering deaf women’s reporting of DV incidences through an intersectional lens, it is clear that they experience a double, or even triple or quadruple disadvantage. We found that, despite professional interpreting services being widely available in the UK, structural barriers still exist for deaf women in gaining access to support for DV, and that barriers are created through inaccessible services, inaccessible information, and lack of awareness of the needs of deaf women in this context. These barriers can be mitigated through training and resources for sign language interpreters, police officers, and other support service providers. We conclude with suggestions for how this research can be applied to interpreting for female DV survivors in other minority communities as well as deaf communities, with suggestions for further research.

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Section: Introductionmentioning

confidence: 99%

“I faced so many barriers”: Access to support for deaf female survivors of domestic violence in the UK

Napier,

Clark,

Leeson

et al. 2024

Journ LRM

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“…Genetic testing has the ability to significantly lower the associated morbidities and mortalities for certain diseases, and in some cases, completely prevent the condition, if adequate measures are adopted to prevent or slow the beginning of the disease. Additional advantages include decreasing hospitalizations and health care costs in addition to easing pain and suffering (2).…”

Section: Introductionmentioning

confidence: 99%

Psychosocial Effect and Role of Genetic Counselling in Primary Health Care

Baoum¹,

Balobaid²,

Aljedany³

et al. 2022

JOHS

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Medical knowledge of both prevalent and rare diseases is changing as a result of recent advanced innovations. In the team that provides genetic services, such as genetic risk assessment, counseling, and continuous medical care for patients with inherited predisposition to disease, primary healthcare plays a crucial role. Primary care physicians can integrate genetic counseling within the larger context of a patient's overall health state since they are accustomed to prioritizing among competing clinical needs. The ongoing relationship that develops between physicians and patients over time is another aspect of primary care that is well-suited for genetic counseling. As patients' needs and emotional states change over time, primary care may provide continual patient education and counseling. When patients ask their primary care physicians about genetic tests and capabilities, they are frequently ill-equipped to respond for which further research along with the training of physicians is needed. Additionally, the majority of patients are also unprepared for the plethora of psychosocial problems that result from genetic testing. The primary care physician is more equipped to incorporate psychosocial factors into any discussion of genetic information since they are more familiar with the patient's broader perspective. When a patient is identified with genetic or familial predisposition to an illness, a number of psychosocial problems may arise. If their risk is revealed, people can be concerned about stigmatization, insurance eligibility, and employment discrimination. The purpose of this research is to review the available information about psychosocial effect and role of genetic counselling in primary health care.

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“…Several studies have looked at the challenges hindering the full realization of personalized precision medicine. Some have pointed out barriers to achieving precision medicine (see literature review), while others highlighted the heterogeneity of resources in the genomic medicine context (Hall and Olopade, 2005; Markens, 2017; Senier et al, 2015; Sleeboom-Faulkner, 2009; for a Canadian example, see Cooke-Hubley and Maddalena, 2011). However, existing studies have not examined specifically what this heterogeneity of resources means in relation to the debate about race/ethnicity’s relationship to precision medicine, nor gone beyond individual barriers to distil the key resources that shape precision medicine at the clinical level.…”

Section: Introductionmentioning

confidence: 99%

Between personalized and racialized precision medicine: A relative resources perspective

Sun

2019

International Sociology

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Since the completion of the first human genome sequencing project in 2003, the potential for incorporating genomics into clinical practice in the pursuit of precision medicine has garnered a great amount of attention and interest. Existing literature presents a dichotomous view of the future of medicine: either precision medicine will replace race-based medicine or race-based medicine will persist despite developments in genetic research and genomic medicine. Drawing on interview data with 46 physicians and scientists in the USA, Canada, and Singapore who are conducting research or practicing precision medicine in the context of cancer treatment and prevention, this article attempts to contribute to the existing debate by proposing a ‘relative resources’ perspective to explain which approach will dominate in a particular healthcare setting. The author elaborates on the ‘heterogeneity of resources’ and suggests that the extent to which precision medicine will be personalized or racialized/ethnicized in the clinic will most likely be a function of the relative availability of resources – including but not limited to financial, human and computer informatics, and legal and infrastructural resources – at individual and collective levels in healthcare contexts.

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Access to genetic testing and genetic counseling in vulnerable populations: the d/Deaf and hard of hearing population

Cited by 4 publications

References 44 publications

“I faced so many barriers”: Access to support for deaf female survivors of domestic violence in the UK

“I faced so many barriers”: Access to support for deaf female survivors of domestic violence in the UK

Psychosocial Effect and Role of Genetic Counselling in Primary Health Care

Between personalized and racialized precision medicine: A relative resources perspective

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