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General HDSA HD Genetic Testing Clinics listing of all facilities approved by CAG Counts and Trials -Huntington's Disease- ... Know Thyself? HDL "Clairvoyance and Caution: Repercussions from the Human Genome Project," What Are Genes; Types of Gene Therapy, Effects, etc. http://kidshealth.org/parent/system/medical/gene_therapy.html Genetic Information and the Family by Bartha Maria Knoppers January 18, 2002
Must genetic knowledge be passed on to blood relatives? The patient may be the best judge. There is an ethical duty to warn relatives. As a last resort, health professionals also have a duty to warn. Wexler, Nancy Sabin, in Seymour Kessler, ed., Genetic Counseling
Psychological Dimensions (New York: Academic Press, 1979).
Genetic Testing Packet
http://www.hdsa.org/edu/edu.pl?orderform#401
$1.00 Order this document online from this link to HDSA's website or call 1-800-345-4372 and ask for Anita Mark-Paul Extension 16. Includes the following:
1) Genetic Testing for Huntington's Disease - What's New?
Dr. Randi Jones, The Marker, Vol. 7, No. 1, 1994. 2 pages.
2) Testing For The Huntington's Disease Gene HDSA,
6 pages. List of HD testing centers.
3) Experiences of Predictive Testing for HD. HDSA, collected from The Marker,
6 pages. Perspectives on predictive testing from people who have taken
the test -- or decided against it.
Nursing and Health/MedscapeWire: Good news from genetic screening
tests can bring more to its recipients than relief: it also can bring doubts
about the future and, in some cases
HDSA Testing Guidelines - Guidelines for Genetic Testing for Huntington's Huntington's Disease CAG Repeat Sizing -Huntington's Disease CAG Huntington's Disease ... CAG v Onset The scatter plot is from A Physician's Guide to the Management Predictive Testing for Huntington's Disease, Fact Sheet 3 - Huntington's Disease Association (UK)(PDF File of 7 Pages)
Predictive Test Guidelines - Guidelines for the Molecular Genetics Predictive
Test in Huntington's Disease. Recommendations concerning the use of a predictive test for the detection of Huntington's disease (HD) were drawn up by a committee consisting of representatives of the International Huntington Association (IHA) and the World Federation of Neurology (WFN) Research Group on Huntington's Chorea. Genetics, Ethics And Human Values: Human Genome Mapping, Genetic Screening
And Gene Therapy by Nancy S. Wexler. Ethical, Legal and Social Issues Many attention and executive tasks adequately assess the progression
of the disease at an early stage. For other functions, the overlapping of
retest effects and disease progression may confuse the results. High
interindividual and intraindividual variability seem to be hallmarks of the
disease. Sporadic Cases of Possible Genetic Diseases: To Test or N...
Arch Neurol. 57;309-310, March 2000, Sporadic Cases of Possible Genetic Diseases: To Test or Not to Test, Thomas D. Bird, MD
The Tiresias complex: Huntington's disease as a paradigm of testing for
late-onset disorders, by Nancy S. Wexler.
WORKPLACE EEOC: Enforcement Guidance (7/27/00): Disability Related Inquiries and
Medical Examinations of Employees Under The Americans With Disabilities Act
http://www.eeoc.gov/docs/guidance-inquiries.html EEOC: Questions & Answers: Disability Related Inquiries and Medical Examinations of Employees Under The Americans With Disabilities Act http://www.eeoc.gov/docs/qanda-inquiries.html Genetic Discrimination in the Workplace
Paul Steven Miller, Commissioner U.S. Equal Employment Opportunity Commission http://www.geneticalliance.org/geneticissues/eeoc.html Department of Labor laws; Ethical, Legal & Social Implications; SHRM Startegy
Suggestions: Genetic Info in the Workplace; SHRM Guidelines for Genetic Info in the Workplace;
Genetic Information: http://www.house.gov/htbin/crsprodget?/rl/RLINDEX
Legal Issues Relating to Discrimination and Privacy
In The Workplace Fact Sheet
American Civil Liberties Union
Two articles:" if an applicant's attending physician's statement indicates a genetic
test has been run on the person, insurance companies do want to see those test
results. Insurers need to have access to all information applicants have, in order
to avoid anti-selection"..."Privacy is a key issue in this discussion, no question
about it. But fairness to all parties is equally important. The playing field must be
kept level for individuals and employers and insurers."
Statement on Protection Against Genetic Discrimination: Participants in the
Jennifer Jones Simon Foundation/Hereditary Disease Foundation sponsored
Workshop on the "Scientific, Medical, Social, Legal Implications of Cancer Gene
Discovery and Testing" held October 29-30, 1995, in Los Angeles discussed the
tremendous potential for benefit to society through understanding genetic
contributions to the cause of cancer.
The ELSI deals with issues of discrimination, privacy, and the psychological
effects surrounding genetics and genetic testing. They will be able to give
you information on insurance issues surrounding genetic testing. |
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