Current and emerging advances in the science of genetics provide significant promise for enhanced... more Current and emerging advances in the science of genetics provide significant promise for enhanced health and well-being and an opportunity for social workers to make a major contribution. As rapid discoveries in genetics (the study of single genes and their effects) and genomics (the study of the functions and interaction of all the genes in the genome) continue to
Genetics and Public Health in the 21st Century, 2000
The Genetic Alliance—a coalition of consumers, professionals, and support groups concerned with t... more The Genetic Alliance—a coalition of consumers, professionals, and support groups concerned with the needs of individuals and families living with genetic conditions—works to educate the general public and providers about the subtle, personal, and familial ramifications of genetic testing. Using the firsthand experiences of its consumer members as a powerful educational tool, the Alliance advocates for the development of genetic testing protocols and dynamic informed-consent standards to ensure autonomous and informed decision making that is founded on current, accurate information at every step of the testing, diagnostic, and treatment-management process. Scientists, ethicists, medical professionals, and other experts routinely play major roles in public policy decision making. The Alliance draws on more than a dozen years of firsthand experience with genetic educational programs for professionals and the public to present consumer perspectives on the policy implications of genetic ...
This paper reports on the rationale, objectives, and outcome of a conference titled “The Human Ge... more This paper reports on the rationale, objectives, and outcome of a conference titled “The Human Genome Project: A Public Forum.” One of the distinguishing features of this conference was that it included both genetics professionals and consumers of genetics services in a dialogue about the potential ethical, legal, and social implications of learning more about one's genes. The conference was planned to yield two products: (1) a set of recommendations for planners of future educational, research, and public policy efforts related to the Human Genome Project; and (2) an assessment of participants' pre‐ and post‐conference knowledge and opinions about the Human Genome Project.
Voluntary, lay genetic support groups have become important providers of supportive, educational,... more 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 empa...
In a study of the perceptions of 332 members of genetic support groups with one or more of 101 di... more 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.
Current and emerging advances in the science of genetics provide significant promise for enhanced... more Current and emerging advances in the science of genetics provide significant promise for enhanced health and well-being and an opportunity for social workers to make a major contribution. As rapid discoveries in genetics (the study of single genes and their effects) and genomics (the study of the functions and interaction of all the genes in the genome) continue to
Genetics and Public Health in the 21st Century, 2000
The Genetic Alliance—a coalition of consumers, professionals, and support groups concerned with t... more The Genetic Alliance—a coalition of consumers, professionals, and support groups concerned with the needs of individuals and families living with genetic conditions—works to educate the general public and providers about the subtle, personal, and familial ramifications of genetic testing. Using the firsthand experiences of its consumer members as a powerful educational tool, the Alliance advocates for the development of genetic testing protocols and dynamic informed-consent standards to ensure autonomous and informed decision making that is founded on current, accurate information at every step of the testing, diagnostic, and treatment-management process. Scientists, ethicists, medical professionals, and other experts routinely play major roles in public policy decision making. The Alliance draws on more than a dozen years of firsthand experience with genetic educational programs for professionals and the public to present consumer perspectives on the policy implications of genetic ...
This paper reports on the rationale, objectives, and outcome of a conference titled “The Human Ge... more This paper reports on the rationale, objectives, and outcome of a conference titled “The Human Genome Project: A Public Forum.” One of the distinguishing features of this conference was that it included both genetics professionals and consumers of genetics services in a dialogue about the potential ethical, legal, and social implications of learning more about one's genes. The conference was planned to yield two products: (1) a set of recommendations for planners of future educational, research, and public policy efforts related to the Human Genome Project; and (2) an assessment of participants' pre‐ and post‐conference knowledge and opinions about the Human Genome Project.
Voluntary, lay genetic support groups have become important providers of supportive, educational,... more 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 empa...
In a study of the perceptions of 332 members of genetic support groups with one or more of 101 di... more 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.
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Papers by Joan Weiss