Genetic Information and the Workplace: Legislative Approaches and Policy Challenges

Rothenberg, Karen H.; Fuller, Barbara P.; Rothstein, Mark A.; Duster, Troy; Kahn, Mary Jo Ellis; Cunningham, Rita; Fine, Ben S.; Hudson, Kathy; King, Mary Claire; Murphy, Patricia D.; Swergold, Gary D.; Collins, Francis S.

doi:10.1126/science.275.5307.1755

Cited by 134 publications

(50 citation statements)

References 5 publications

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“…As new information becomes available, it must be incorporated into health care paradigms that were simply not developed to handle such knowledge. Many important questions arise (Rothenberg et al, 1997 Crit Rev Oral Biol Med vices provided? Who will pay for such testing and treatments?…”

Section: Future Implications For Oral Medicinementioning

confidence: 99%

The Impact of Molecular Genetics on Oral Health Paradigms

Hart

Marazita

Wright

2000

Critical Reviews in Oral Biology & Medicine

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As a result of our increased understanding of the human genome, and the functional interrelationships of gene products with each other and with the environment, it is becoming increasingly evident that many human diseases are influenced by heritable alterations in the structure or function of genes. Significant advances in research methods and newly emerging partnerships between private and public sector interests are creating new possibilities for utilization of genetic information for the diagnosis and treatment of human diseases. The availability and application of genetic information to the understanding of normal and abnormal human growth and development are fundamentally changing the way we approach the study of human diseases. As a result, the issues and principles of medical genetics are coming to bear across all disciplines of health care. In this review, we discuss some of the potential applications of human molecular genetics for the diagnosis and treatment of oral diseases. This discussion is presented in the context of the ongoing technological advances and conceptual changes that are occurring in the field of medical genetics. To realize the promise of this new molecular genetics, we must be prepared to foresee the possibilities and to incorporate these newly emergent technologies into the evolving discipline of dentistry. By using examples of human conditions, we illustrate the broad application of this emerging technology to the study of simple as well as complex genetic diseases. Throughout this paper, we will use the following terminology: Penetrance In a population, defined as the proportion of individuals posessing a disease-causing genotype who express the disease phenotype. When this proportion is less than 100%, the disease is said to have reduced or incomplete penetrance. Polymerase chain reaction (PCR)-A technique for amplifying a large number of copies of a specific DNA sequence flanked by two oligonucleotide primers. The DNA is alternately heated and cooled in the presence of DNA polymerase and free nucleotides, so that the specified DNA segment is denatured, hybridized with primers, and extended by DNA polymerase. MIM-Mendelian Inheritance in Man catalogue number from V. McKusick's Mendelian Inheritance in man (OMIM, 1998).

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Section: Future Implications For Oral Medicinementioning

confidence: 99%

The Impact of Molecular Genetics on Oral Health Paradigms

Hart

Marazita

Wright

2000

Critical Reviews in Oral Biology & Medicine

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“…Furthermore, the possibility of predicting future, in addition to existing, health problems through genetically based tests has heightened privacy concerns. Many commentators have warned of potential privacy violations or breaches of confidentiality [Natowicz et al, 1992;Kass, 1993;Gostin, 1995a;Orentlicher, 1997] and many have proposed remedies [NIH-DOE, 1993;Rothenberg et al, 1997;Gostin and Hodge, 2002]. State and federal legislators have considered measures to limit the types of medical information that can be released and under what conditions.…”

Section: Introductionmentioning

confidence: 99%

Medical privacy and the disclosure of personal medical information: The beliefs and experiences of those with genetic and other clinical conditions

Kass

Hull

Natowicz

et al. 2004

American J of Med Genetics Pt A

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There has been heightened legislative attention to medical privacy and to protections from genetic discrimination, without large-scale studies to document privacy concerns or analysis of whether experiences differ by whether the condition is genetic (defined here as a single-gene disorder) or non-genetic. To determine whether experiences regarding privacy, disclosure, and consequences of disclosure differ by whether one's medical condition is genetic, we conducted a descriptive study with one-time, structured quantitative and qualitative interviews. We interviewed approximately 100 adults or parents of children with each of the following medical conditions: sickle cell disease, cystic fibrosis, diabetes, and HIV, and 200 adults with or at risk for breast cancer or colon cancer. The percentages of the total 597 respondents experiencing positive or negative consequences of disclosure and the degree to which experiences differed by whether the condition was genetic were the outcomes of interest. Seventy-four percent were glad and 13% regretted others knew about their condition; these findings did not differ significantly by genetic vs. non-genetic condition. Reports of job and health insurance discrimination were not uncommon for the overall study population (19 and 27%, respectively) but were more likely among those with genetic conditions (30 and 37%, respectively). Legislation and other policymaking should target the needs of persons with all conditions and not focus exclusively on genetic discrimination, given that experiences and concerns generally do not differ based on the genetic etiology of the condition.

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“…Patients are vulnerable and face the risk of being stigmatized in society and may lose their jobs if management knows about the full implication of their medical condition. A customer care or front desk personnel with mild epilepsy or genetic predisposition to situations that make him/her not to be competent will surely encounter a lot of confrontations from his or her boss (Rothenberg et al, 1997). The full knowledge of the genetic condition and that it must be managed for a lifetime can cost such a person his or her job.…”

Section: Sociocultural Implication Of Knowing Your Partner's Genome Imentioning

confidence: 99%

“…In a typical case, an individual who takes 5 to 8 days off his or her job monthly to seek medical attention due to sickle cell anemia crises is likely to lose the job after 6 months. A genetic condition such as Edward's syndrome, Down syndrome, cystic fibrosis, among others may get many people not hired in some industries (Rothenberg et al, 1997). Knowing that your genetic information can cause you your job and social respect, how much can you trust your spouse and share this information with him/her?…”

Section: Sociocultural Implication Of Knowing Your Partner's Genome Imentioning

confidence: 99%

The impact of genome information on mate selection: From the African perspective

Adadey¹

2017

J. Med. Genet. Genomics

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Mate selection in humans is an important social activity which is central to every individual's life. The debate on the ethics of generating and using genetic information has been of concern to several researchers from the time of the completion of the human genome project till now. Some of the important questions to consider include whether it is ethical to generate and use genetic information in mate selection. This piece of literature is focused on critically evaluating the possible impacts of the knowledge of the genomic information on the choice of a life partner from the African perspective.

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Genetic Information and the Workplace: Legislative Approaches and Policy Challenges

Cited by 134 publications

References 5 publications

The Impact of Molecular Genetics on Oral Health Paradigms

The Impact of Molecular Genetics on Oral Health Paradigms

Medical privacy and the disclosure of personal medical information: The beliefs and experiences of those with genetic and other clinical conditions

The impact of genome information on mate selection: From the African perspective

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