Download Policy Statement on Genetic Testing

Survey
yes no Was this document useful for you?
   Thank you for your participation!

* Your assessment is very important for improving the workof artificial intelligence, which forms the content of this project

Document related concepts
no text concepts found
Transcript
National American Affairs/Domestic Policy
Chicago
July 1997
POLICY STATEMENT ON GENETIC TESTING
1
Advances in genetic science are creating a paradigm shift in medicine—from
2
symptomatic to presymptomatic diagnoses—thus potentially leading to a disease-free
3
future. Researchers are currently racing to map the whole human genome and identify
4
genetic “markers” that may be predictive of the onset of disease. Genetic tests, both
5
those used in research and those available commercially, may be able to demonstrate
6
whether an individual holds such a marker. The availability of such tests raises some
7
very important ethical, legal, and social issues.
8
9
Recently, scientists have isolated two genes (BRCA1 and BRCA2) that are closely linked
10
to breast and ovarian cancer if they are mutated, or altered.
Further research has
11
indicated that certain mutations of these genes have a higher-than-expected frequency in
12
women of Ashkenazi (Eastern European) Jewish descent than in other population groups.
13
(Some other BRCA1 and BRCA2 mutations are also found in higher-than-expected
14
frequency in other population groups, and it is expected that more will be identified. The
15
Ashkenazi Jewish population was chosen simply as a useful, early sample because of
16
coherent population patterns.) It is now believed that 1 in 50 Ashkenazi Jewish women
17
may carry one of these mutations, which may account for a slight (1%) increased lifetime
18
risk for breast or ovarian cancer. It is important to note in this context that hereditary
19
links account only for an estimated 5 to 10% of all cases of breast cancer.
20
21
Because at this time there are few preventive measures and no cure for breast cancer, the
22
availability of genetic tests to determine the presence of mutations, and the corresponding
23
degree of risk for the disease, raises some extremely important issues for Jewish women
24
and their families. Imprecise press accounts and other forms of misinformation have
25
raised the specter that Jewish women have a unique and greatly heightened predisposition
26
to breast cancer, with implications for potential discrimination in employment and
27
insurance. The most obvious way the discrimination may occur is through the use of
28
genetic information by insurance carriers or employers.
National American Affairs/Domestic Policy
Chicago
July 1997
29
Genetic tests for breast cancer cannot be 100% predictive of the onset of the disease. If
30
an individual is found to have one of the mutations, s/he may have up to a 65% chance of
31
eventually developing breast cancer.
32
mutation(s) will never have the disease. Conversely, an individual who tests negative for
33
the mutations may still get breast cancer (all women have a 1 in 8 chance of having the
34
disease if they live to age 85.) Moreover, a test may yield inaccurate results. The
35
reproducibility, sensitivity, specificity and predictive value of the tests are not fully
36
known.
However, one in three individuals with the
37
38
Nevertheless, information from these tests and research studies may be utilized by
39
insurers or employers to discriminate. Discrimination based on genetic information has a
40
long and well-documented history in other population groups with diseases such as
41
sickle-cell anemia and hemachromatosis. Fear of discrimination is currently dissuading
42
members of the Jewish community from participating in potentially important research
43
projects or from getting a genetic test even where it is appropriate.
44
45
The Jewish community has long supported individuals’ rights to determine the course of
46
their own medical care and has actively participated in medical research. Hadassah
47
believes that there should be ample opportunities for individuals to participate in
48
promising research studies.
49
community’s interest in abating fear and avoiding stigmatization or discrimination and
50
the scientific community’s interests in furthering its knowledge in the quest to
51
understand, prevent and cure cancer.
52
potentially aggressive and fear-based marketing techniques of those who stand to profit
53
from commercially available genetic tests.
However, legitimate tension exists between the Jewish
There is also the need to protect against the
54
55
Hadassah is committed to the following courses of action:
56
57
1.
Initiating a community-wide discussion nationally on the issue of breast cancer,
58
hereditary and otherwise—its causes and risks, facts and myths. In order to combat
59
misinformation, Hadassah will disseminate public health materials to help Jewish women
National American Affairs/Domestic Policy
Chicago
July 1997
60
and their families assess their risk and their appropriateness for genetic testing and/or
61
involvement in university-sponsored research protocols. It will also continue to advocate
62
for measures aimed at identifying prevention strategies and finding a cure for breast
63
cancer;
64
65
2.
Advocating for legislative measures, at both federal and state levels, that will
66
compliment the “Kennedy-Kassebaum” law and prevent genetic-based discrimination in
67
insurance and employment and ensure the confidentiality of medical records;
68
69
3.
Supporting widely available and appropriately administered research studies
70
aimed at providing more information on this topic. Such research studies must be
71
accompanied by proper informed consent procedures and comprehensive genetic
72
counseling;
73
74
4.
Working with the genetic testing companies, the oncological community and
75
others to combat fear-based and stigmatizing marketing techniques and inappropriate
76
uses of genetic tests in the Jewish community, while reiterating that current knowledge
77
does not provide a mandate for broad-scale testing of individuals outside of a controlled
78
research setting; and,
79
80
5.
Continuing to promote the study of the usefulness of genetic tests in the breast
81
cancer context, the potential need for government regulation and the impact of test results
82
on members of the Jewish community.
83
84
Hadassah is hopeful that genetic research will play a major role in life-saving disease
85
prevention and cures for all people, regardless of gender or ethnic heritage. However, it
86
is essential that our country’s public policy provide the needed safeguards with regard to
87
these important findings.