Genetic discrimination in life insurance: empirical evidence from a cross sectional survey of genetic support groups in the United Kingdom
BMJ 1998; 317 doi: https://doi.org/10.1136/bmj.317.7173.1632 (Published 12 December 1998) Cite this as: BMJ 1998;317:1632All rapid responses
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We, as part-time insurance medical officers, agree with Low et al (
BMJ 12th, December, 1998 ) that incorrect assessment of genetic risk is
deplorable, both for insurers and their clients. The authors explained
that they could not check whether the insurers’ decisions were fair and
justified; without such checks allegations of malpractice cannot be
sustained. Even the data provided fail to support their argument.
The charge is based on their Table 3, which aggregates 533 applicants who
have been shown not to have an additional genetic risk, but 71 of whom
(13%) reported "problems" in obtaining insurance.
The study design meant that members of societies, which exist to further
the interest of those with genetic disorders, were asked about problems
with insurance. Only 53% replied. It is improbable that the non-responders
have the same problem rate as responders, particularly when the survey
invites complaints. No information was given about the comparability of
the studied, and control, groups; had they similar ages, sex, and social
class? Different questions were asked of both groups.
With regard to the "problems" encountered; why were medical examinations
deemed "unnecessary"? These are generally requested if a large amount of
insurance cover is applied for. What was the number of "necessary" medical
examinations, or was the question not asked?
Of all the 13% reporting problems were none hypertensive, or diabetic? And
none overweight? One further possible explanation - other than responder
bias - is increased age; 474/533 (89%) only discovered their genetic
status after the diagnosis of an affected child. They will therefore be
older than the average applicant. Age is a strong predictor of morbidity,
and therefore adverse insurance terms. Also, it was not stated at what
stage the applicants met problems. With an autosomal dominant late-onset
disorder increased premiums would be required only before a negative test
was found. That 28 of 59 (47%) in this group reported adverse terms,
suggests that some repliers reported historical difficulties. Correction
for these factors would probably reduce the percentage with adverse terms
to the norm.
Perceptions of unfair treatment are opinions, not facts. It is unfortunate
that these were extrapolated to "empirical evidence of genetic
discrimination." An overinterpretation of this nature is unscientific and
does little to assist the endeavours being made within the insurance
business to provide fair and accurate assessment for all requiring life
insurance.
Dr WT Hamilton, MRCP,MRCGP. 12, Barnfield Hill, Exeter EX1 1SR.
Dr GH Hall, MD, FRCP. Ballamount, Broadclyst, Exeter, EX5
3BJ.
Competing interests: No competing interests
Genetic discrimination
Discrimination is an interesting word that has fallen on hard times
in recent years. The word has become a pejorative and implies the
discriminator is performing a harmful act. Discrimination is to
differentiate or to identify differences in cohorts that are otherwise
similar but it may be for the good. We discriminate when we accept
candidates for medical school because some are more qualified than others.
I hope the readers of the BMJ will use their discriminatory powers when
reading the article by Low et al (BMJ 1998;317:1632-5). The authors have
used different questions to compare several different cohorts and then
stated that insurers are not consistent. They conclude that their study
provides evidence of genetic discrimination.
In the omnibus group they found 5% of insurance applicants were
declined or had their policies rated. The figure is slightly lower than
the 7% usually reported by the American Council of Life Insurance in the
annual Fact Book. One would expect the members of genetic support groups
to exceed this figure as the groups include not only at risk family
members but many who have the disease. Table 1 indicates that 50.8% of all
members of these groups had their physical health affected. Would it not
be prudent for underwriters to rate or decline policies to many of these
respondents? In Table 2 the authors show that only 33.4% of respondents
had problems acquiring life insurance.
As our knowledge of the variation in penetrance and the range of
expression of many genetic diseases expands it is clear that some old
concepts about the frequency of spontaneous mutations, or who is a
“healthy” carrier will also change. The authors classify several genetic
diseases as “uninherited” but most demonstrate variations in penetrance.
In considering family members, underwriters cannot be expected to
distinguish those with new mutations from those with predisposing,
unexpressed genetic diseases.
There are clearly errors in a few underwriting decisions (Table 3)
but we are not offered any information about when these decisions were
made. Insurance underwriting practices are changing just like our
knowledge about genetic risk. If some of these adverse underwriting
decisions were made several years ago, they were probably based on the
inadequate information available at the time. The Human Genome Project is
changing the way we classify disease. It is forcing health care
professionals and insurers to learn new concepts and to revise their
thinking. Underwriters will continue to discriminate in a fair manner, in
this new era but their task is to identify and price for risk.
Competing interests: No competing interests