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Biomedical subjects

J O Weiss

Publications and source records attributed to J O Weiss.

18 recordsLinked to original sources
PubMed1998

Consumer perspectives on genetic testing, research and services for ethnoculturally diverse populations.

A panel of individuals from diverse ethnocultural backgrounds and representing a variety of genetic disorders presented their consumer perspectives on genetic programs, testing and services. Their remarks emphasized how misunderstanding and miscommunication between health care professionals and many of the populations for whom they provide services can lead to unfilled genetic service needs. Panelists recommended that health care professionals become more aware and knowledgeable about the diversity of customs, beliefs and cultures of those receiving their services. Only by building a foundation of trust and mutual respect will genetic testing, research and services become more accessible to individuals from diverse populations, their families and their communities.

Journal Article↗
PubMed1996

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.

Adult↗
PubMed1995

Informed consent for genetic research on stored tissue samples.

OBJECTIVE: To develop recommendations for obtaining adequate informed consent in the future when gathering tissue samples that may be used for genetic studies and defining the circumstances under which it is necessary to obtain further consent if tissue samples already in hand are to be used for such research. PARTICIPANTS: Scientists, ethicists, lawyers, and consumers selected by the National Center for Human Genome Research and the Centers for Disease Control and Prevention to represent a wide array of opinions. EVIDENCE: Statutes, regulations, and cases and articles on law and ethics. CONSENSUS PROCESS: Initial workshop, followed by circulation of several drafts of this document with opportunities for comment by workshop participants and others as well as smaller meetings involving participants with widely differing views. CONCLUSION: Genetic research using stored tissue samples poses an array of benefits and risks to individuals, researchers, and society. As a result, the workshop participants conclude that (1) informed consent is required for all genetic research using linkable samples unless conditions for limitation or waiver are met; (2) informed consent is not required for genetic research using anonymous samples but may be considered if identifiers are to be removed from currently linkable samples; (3) institutional review boards could usefully review all protocols that propose to use samples for genetic research; and (4) further work regarding these issues is warranted.

Anonymous Testing↗
PubMed1992

Support groups for patients with genetic disorders and their families.

In conclusion, those working in pediatric clinics owe it to themselves to know about the relatively new team member, the genetic support group. As the human genome becomes less mysterious to professional and patient alike and as its demystification creates an ever-increasing number of ethical and social dilemmas, consumers and professionals, interested perhaps for different reasons in finding treatment and cure, must work together as partners. Availability of medical care for the family who must cope with a genetic disorder is only one part of the total health picture. Access to communication with and compassion of one family with another family, of one child with another child, of one parent with another parent, within a support group of caring persons, proves one of the most meaningful medical tools that pediatricians can offer their patients. Those working within the walls of the pediatric clinic are in a crucial place to address the comprehensive needs of families with genetic disorders and to identify the role of the genetic support group in a treatment plan.

Genetic Diseases, Inborn↗
PubMed1990

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 Counseling↗
PubMed1989

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.

Genetic Counseling↗
PubMed1989

Genetic support groups in the delivery of comprehensive genetic services.

This research sought information about the services provided by genetic support groups, their members' experiences in obtaining genetic and related services, and members' recommendations for improving services. Results from a survey of 43 directors of genetic support groups showed that these organizations not only provide their members with a wide range of informational and supportive services but also address the need for education of both the public and health professionals about genetic disorders. A second survey of 931 members of genetic support groups found that, although they obtained genetic information from a variety of professional and informal sources, many of them experienced barriers to obtaining sufficient genetic information. Respondents called for professionals to improve their interpersonal skills in working with clients and to assist families in obtaining a wider variety of services. On the basis of these findings, a service model and priorities are proposed to bring together genetic specialists, community professionals, and genetic support groups for the delivery of comprehensive services to individuals and families with genetic disorders.

Child↗
PubMed1988

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.

Genetic Counseling↗
PubMed1981

Psychosocial stress in genetic disorders: a guide for social workers.

Genetic disease affects not only the patients with the diagnosed genetic condition or the carrier of the genetic trait, but also parents, siblings, grandparents, spouses, and the community in which the patient lives. This paper delineates some of the major personal and social cost of genetic disease on a number of levels: personal, marital, parental, family, group, and community. Genetic social work is emerging as an essential new service to persons needing help with the emotional impact of a genetic diagnosis. It is important for social workers to be aware of all levels of stress associated with a genetic disorder in order to help individuals and those close to them cope with the diagnosis or occurrence of a genetic disorder, with the threat of a genetic disorder, and with the recurrent life stresses which they may encounter.

Adaptation, Psychological↗
PubMed1981

Impairment, psychiatric symptoms, and handicap in dwarfs.

Impairment, handicap and psychiatric symptoms were systematically studied in 84 dwarfs. Although all subjects were physically impaired by virtue of their skeletal dysplasias, only those with severe physical abnormalities were handicapped in obtained education and employment. Handicap in finding marital partners was present and unrelated to physical impairment rating. Fewer than half the subjects had ever married. Men in this sample, who were often extraverted as measured by the Eysenck Personality Inventory, complained less often of psychiatric symptoms and felt less stigmatized than the women subjects.

Adolescent↗
PubMed1976

Social work and genetic counseling.

Genetic counselors often impart anxiety-producing information to the patient and his family. A social worker should be available to help these individuals deal with the emotional impact of the genetic facts given them. Areas of concentration for the social worker in the genetics setting include aid in family planning, identification of psychosocial aspects of genetic disorders, and help in interpreting and understanding the genetic diagnosis and medical recommendations. The individual who discovers he possesses or transmits a defective gene needs help in improving his self-image and in relieving his guilt load.

Adult↗
PubMedDate not supplied

The gap between practice and genetics education of health professionals: HuGEM survey results.

PURPOSE: To determine the genetics education needs and priorities of dietitians, occupational therapists, physical therapists, psychologists, speech-language-hearing specialists, and social workers. METHODS: A random sample mail survey of 3,600 members of 6 national health professional organizations was undertaken in 1998 and resulted in 1,958 responses. RESULTS: A majority worked with clients with genetic conditions, most were providing genetic services to some clients, few had high confidence in providing genetic services, most had little or no education in genetics, and two-thirds wanted continuing education. CONCLUSION: The study shows a critical need for genetics education of allied and counseling health professionals.

Adult↗
PubMedDate not supplied

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 Counseling↗