Genetic Support Groups Research Articles

Sounding out solutions: using SONAR to connect participants with relevant healthcare resources.

This article outlines a scalable system developed by the All of Us Research Program's Genetic Counseling Resource to vet a large database of healthcare resources for supporting participants with health-related DNA results. After a literature review of established evaluation frameworks for health resources, we created SONAR, a 10-item framework and grading scale for health-related participant-facing resources. SONAR was used to review clinical resources that could be shared with participants during genetic counseling. Application of SONAR shortened resource approval time from 7 days to 1 day. About 256 resources were approved and 8 rejected through SONAR review. Most approved resources were relevant to participants nationwide (60.0%). The most common resource types were related to support groups (20%), cancer care (30.6%), and general educational resources (12.4%). All of Us genetic counselors provided 1161 approved resources during 3005 (38.6%) consults, mainly to local genetic counselors (29.9%), support groups (21.9%), and educational resources (21.0%). SONAR's systematic method simplifies resource vetting for healthcare providers, easing the burden of identifying and evaluating credible resources. Compiling these resources into a user-friendly database allows providers to share these resources efficiently, better equipping participants to complete follow up actions from health-related DNA results. The All of Us Genetic Counseling Resource connects participants receiving health-related DNA results with relevant follow-up resources on a high-volume, national level. This has been made possible by the creation of a novel resource database and validation system.

Citizens under the umbrella: citizenship projects and the development of genetic umbrella organizations in the USA and the UK

Social scientists have observed previously that patient support groups began to have significant influence over both research and clinical services of medical genetics in the early 2000s. This observation led to the idea of genetic citizenship, suggesting that the active participation and intervention of patient support groups in the rapidly growing field of medicine marked the emergence of a new form of citizenship. To understand how this citizenship emerged, this paper examines the development of umbrella organizations of genetic support groups in the USA and the UK. The historical analysis demonstrates that the ways in which these organizations developed differ considerably, and that their visions and activities reflected the different structural and cultural organizations of medical genetics in their respective countries. By recognizing the early work of these organizations as citizenship projects, this article argues that they helped rather different forms of genetic citizenship to emerge in the two countries.

2012 National Society of Genetic Counselors Presidential Address: Maintaining Our Professional Identity in an Ever‐Expanding Genetics Universe

2012 National Society of Genetic Counselors Presidential Address: Maintaining Our Professional Identity in an Ever‐Expanding Genetics Universe

Response to Robert G. Resta Commentary (Unprepared, Understaffed, and Unplanned: Thoughts on the Practical Implications of Discovering New Breast and Ovarian Cancer Causing Genes)

Response to Robert G. Resta Commentary (Unprepared, Understaffed, and Unplanned: Thoughts on the Practical Implications of Discovering New Breast and Ovarian Cancer Causing Genes)

Genetic discrimination in life insurance: empirical evidence from a cross sectional survey of genetic support groups in the United Kingdom

Objectives: To gather empirical evidence on any discrimination based on genetic information shown by the insurance industry in the United Kingdom and to assess how society is likely to handle...

Objectives of genetic counselling: differing views of purchasers, providers and users.

This study aimed to compare the views of purchasers, providers and users about the objectives of genetic counselling. A modified Delphi technique was used, incorporating two postal questionnaires that were sent to six study groups with a three-month interval: purchasers (public health doctors (n = 37) and regional advisers in general practice (n = 35)); providers (clinical geneticists (n = 33) and genetic counsellors (n = 25)); and users (out-patients (n = 36) and members of genetic support groups (n = 32)). The response rate for the first questionnaire was 115/198 (58 per cent) and for the second, 102/198 (52 per cent). The first questionnaire asked an open-ended question about what the objectives of genetic counselling should be and asked respondents to rank order them. The second questionnaire summarized the views expressed in the first questionnaire and asked respondents to rank order the most frequently cited and most highly ranked five objectives. The five most frequently cited and highly ranked objectives from Questionnaire One were, in descending order: provide information, give support, facilitate decision-making, assess risk and achieve understanding. In response to Questionnaire Two, purchasers differed from providers and users in rating 'facilitate decision-making' more highly than did providers and users. By contrast, providers and users rated 'give information' more highly than did purchasers. Purchasers hold different views from providers and users about what the objectives of genetic counselling should be. This raises two questions: (1) Which views are or should be most influential in the future development of genetic counselling? (2) By what processes can more than one view on genetic counselling be integrated?

Book Review:Starting and Sustaining Genetic Support Groups. By Joan O. Weiss, MSW and Jayne S. Mackta. The Johns Hopkins University Press, Baltimore, 1996, 149 pp. ($40.00 hardcover, $18.95 paperback)

<i>Book Review:</i><b>Starting and Sustaining Genetic Support Groups.</b> By Joan O. Weiss, MSW and Jayne S. Mackta. The Johns Hopkins University Press, Baltimore, 1996, 149 pp. ($40.00 hardcover, $18.95 paperback)

Genetic discrimination: perspectives of consumers.

In a study of the perceptions of 332 members of genetic support groups with one or more of 101 different genetic disorders in the family, it was found that as a result of a genetic disorder 25 percent of the respondents or affected family members believed they were refused life insurance, 22 percent believed they were refused health insurance, and 13 percent believed they were denied or let go from a job. Fear of genetic discrimination resulted in 9 percent of respondents or family members refusing to be tested for genetic conditions, 18 percent not revealing genetic information to insurers, and 17 percent not revealing information to employers. The level of perceived discrimination points to the need for more information to determine the extent and scope of the problem.

The role of genetic support groups.

This article offers a brief history of genetic support groups, a description of their various functions, and ways in which nurses can collaborate with these voluntary genetic organizations to enrich their clinical services to patients. This will enable nurses to increase their awareness of the importance of these groups. Genetic support groups are an important part of health-care planning for individuals affected by genetic disorders and their families.

Genetic Disorders: Support Groups and Advocacy

Support groups have begun to take an active role in advocating for the planning, development, and delivery of effective services for individuals and families affected by genetic disorders. The author provides a brief history of voluntary organizations dealing with genetic disorders, describes some specific advocacy efforts assumed by these groups, and offers suggestions of ways in which human service professionals can help genetic support groups mobilize for improved and necessary genetic services and benefits.

Genetic Support Groups and Social Workers as Partners

Collaborations with individual genetic support groups and with regional and national coalitions offer social workers the opportunity to expand their contributions to genetic services. Explored in this article are the current service contributions of genetic support groups, the potential impact of the national Alliance of Genetic Support Groups, and the opportunities for social workers to form mutually advantageous partnerships with genetic organizations. This expanded agenda for social work in genetic services also challenges the profession to translate the concept of partnership into action in the many other service areas in which social workers offer their skills.

Genetic support groups: a continuum of genetic services.

Genetic counseling for parents of children with a genetic disorder is only the beginning of needed support services. One important member of the health team is the genetic support group. Within a genetic support organization, individuals and families discover that they are not alone and that they can be helped by others affected by similar genetic diagnoses. Ideally, a strong partnership between the support group members and interested health professionals will enable the organization to meet its goals. Networks, such as the Alliance of Genetic Support Groups, can help member organizations become a unified force without taking away their individual agendas.

A professional partnership with genetic support groups.

Voluntary, lay genetic support groups have become important providers of supportive, educational, and social services for clients and families who face genetic disorders. A survey of 88 persons representing genetic support groups confirms that these organizations are providing their members with information and assistance about not only the genetic aspects of the disorders but also problems of daily living. Respondents noted that professionals frequently refer patients to their groups and that many of the groups have professionals working directly with them as guest lecturers, consultants, and advisory board members. At least 20% cited a lack of genetic counseling services for members of their groups as a serious problem and called for greater sensitivity to emotional concerns in the timing and delivery of genetic counseling by professionals. Respondents called for greater collaboration between the voluntary organizations and professionals but underscored the unique benefits of empathy and support from one's peers.