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Prenatal Predictive testing for HD
Lancet Volume 357, Number 9259 17 March
2001
Predictive testing for Huntington's disease |
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Sir Michael Hayden's Dec 9 commentar is
a timely report on the experience of
almost 15 years of predictive testing for Huntington's disease.
In addition to the factors he mentions for the low uptake of prenatal
testing is an issue of identity between the parent who carries the mutation and an affected fetus.
A decision to terminate such a pregnancy involves destroying a fetus
that is in the same genetic situation as that parent. Some of the people in families that carry the disease feel this dilemma
acutely.
Our evidence supports Hayden's point that parents are reluctant to use prenatal
testing for various late-onset
disorders.
In a questionnaire survey of students
and adult women, 98% of
our sample thought prenatal testing should be offered
for disorders such as Tay Sach's disease or cystic fibrosis, but
80% thought so
for Huntington's disease and inherited breast cancer syndromes (unpublished data).
Men and women may differ in their response to information about
health
risks.More women than men request predictive genetic testing or
carrier detection testing, which could relate
to the
position that women hold in
families as
being the so-called genetic housekeepers. |
Typically women have most knowledge of family medical history.2
Work with women
who have an inherited risk of breast or ovarian cancer shows that many perceive
themselves as having
a responsibility to their kin (past, present, and future generations) to establish the magnitude of the risks to themselves
and family members, and to act on this information by some form of risk management. 3
The acknowledgment of genetic
respon-sibility for kin seems part of this same typically female role.
Martin Richards
----------------------------------------------------
Centre
for Family Research, University of Cambridge, Cambridge
CB2 3RF, UK (e-mail: mpmr@cam.ac.uk)
1 Hayden MR. Predictive testing for Huntington's disease: the
calm after the storm.Lancet 2000; 356: 1944-45. [Text]
2 Richards MPM. Families, kinship and genetics. In: Marteau
T, Richards MPM, eds.
The troubled helix. Cambridge: Cambridge University Press, 1996: 249-73.
3 Hallowell N. Doing
the right thing: genetic risk and responsibility.Sociol Health Illness 1999; 21: 597-621. [PubMed]
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Lancet Volume 357, Number 9259 17 March
2001
Predictive testing for Huntington's disease
Sir--Michael Hayden's Dec 9 commentar is a timely report on
the experience of
almost 15 years of predictive testing for Huntington's disease. In addition to the
factors he mentions
for the low uptake of prenatal testing is an issue of identity
between the parent who carries the mutation and an affected
fetus. A decision
to terminate such a pregnancy involves destroying a fetus that is in the same
genetic situation as
that parent. Some of the people in families that carry the
disease feel this dilemma acutely.
Our evidence supports
Hayden's point that parents are reluctant to use prenatal
testing for various late-onset disorders. In a questionnaire
survey of students
and adult women, 98% of our sample thought prenatal testing should be offered
for disorders such
as Tay Sach's disease or cystic fibrosis, but 80% thought so
for Huntington's disease and inherited breast cancer syndromes
(unpublished data).
Men and women may differ in their response to information about health risks.
More women than
men request predictive genetic testing or carrier detection testing,
which could relate to the position that women hold
in families as being the
so-called genetic housekeepers.
Typically women have most knowledge of family medical history.2
Work with women
who have an inherited risk of breast or ovarian cancer shows that many perceive
themselves as having
a responsibility to their kin (past, present, and future generations)
to establish the magnitude of the risks to themselves
and family members, and to
act on this information by some form of risk management.3
The acknowledgment of genetic
responsibility for kin seems part of this same typically
female role.
Martin Richards
--------------------------------------------------------------------------------
Centre
for Family Research, University of Cambridge, Cambridge
CB2 3RF, UK (e-mail:mpmr@cam.ac.uk)
1 Hayden MR. Predictive
testing for Huntington's disease: the calm after the storm.
Lancet 2000; 356: 1944-45. [Text]
2 Richards MPM. Families,
kinship and genetics. In: Marteau T, Richards MPM, eds.
The troubled helix. Cambridge: Cambridge University Press, 1996:
249-73.
3 Hallowell N. Doing the right thing: genetic risk and responsibility.
Sociol Health Illness 1999;
21: 597-621. [PubMed]
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