| Title |
Military Health Care Dilemmas and Genetic Discrimination: A Family's Experience with Whole Exome Sequencing
|
|---|---|
| Published in |
Narrative Inquiry in Bioethics, June 2015
|
| DOI | 10.1353/nib.2015.0059 |
| Pubmed ID | |
| Authors |
Benjamin M. Helm, Katherine Langley, Brooke B. Spangler, Samantha A. Schrier Vergano |
| Abstract |
Whole-exome sequencing (WES) has increased our ability to analyze large parts of the human genome, bringing with it a plethora of ethical, legal, and social implications. A topic dominating discussion of WES is identification of "secondary findings" (SFs), defined as the identification of risk in an asymptomatic individual unrelated to the indication for the test. SFs can have considerable psychosocial impact on patients and families, and patients with an SF may have concerns regarding genomic privacy and genetic discrimination. The Genetic Information Nondiscrimination Act of 2008 (GINA) currently excludes protections for members of the military. This may cause concern in military members and families regarding genetic discrimination when considering genetic testing. In this report, we discuss a case involving a patient and family in which a secondary finding was discovered by WES. The family members have careers in the U.S. military, and a risk-predisposing condition could negatively affect employment. While beneficial medical management changes were made, the information placed exceptional stress on the family, who were forced to navigate career-sensitive "extra-medical" issues, to consider the impacts of uncovering risk-predisposition, and to manage the privacy of their genetic information. We highlight how information obtained from WES may collide with these issues and emphasize the importance of genetic counseling for anyone undergoing WES. |
X Demographics
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Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 1 | 100% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 1 | 100% |
Mendeley readers
The data shown below were compiled from readership statistics for 29 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 29 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Researcher | 5 | 17% |
| Student > Bachelor | 5 | 17% |
| Student > Master | 3 | 10% |
| Other | 2 | 7% |
| Unspecified | 2 | 7% |
| Other | 4 | 14% |
| Unknown | 8 | 28% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 5 | 17% |
| Biochemistry, Genetics and Molecular Biology | 3 | 10% |
| Psychology | 3 | 10% |
| Unspecified | 2 | 7% |
| Social Sciences | 2 | 7% |
| Other | 4 | 14% |
| Unknown | 10 | 34% |
Attention Score in Context
This research output has an Altmetric Attention Score of 4. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 22 October 2019.
All research outputs
#8,262,107
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Outputs from Narrative Inquiry in Bioethics
#72
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Outputs of similar age
#92,690
of 281,411 outputs
Outputs of similar age from Narrative Inquiry in Bioethics
#4
of 10 outputs
Altmetric has tracked 25,374,647 research outputs across all sources so far. This one has received more attention than most of these and is in the 66th percentile.
So far Altmetric has tracked 206 research outputs from this source. They receive a mean Attention Score of 4.8. This one has gotten more attention than average, scoring higher than 65% of its peers.
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