Mr.
Harper: The way that the hon. Gentleman came to a
conclusion was helpful, given that I was about to ask about the matter.
I agree with some of what he said, but there are two dangers in respect
of insurance. First, it is already the case that, if something has
happened to people that is known about, an insurance company is allowed
to take that information into account. If someone has a terminal
illness, an insurance company can decide not to write life cover for
them or to do so on terms that would be expensive. He might say that
that would be discriminatory. However, if that could be done, clearly
the basis on which insurance is done would fall
apart. The
second danger comes down to the quality of information , which is one
reason the moratorium is in place. If individuals can arrange their own
genetic testing and know their genetic inheritance, yet the insurance
company is not allowed to use it, people will be able to get insurance
for all sorts of things, which again may
lead to that insurance not being available for
everyone. There is a public policy issue to deal with here, but I am
not sure that adding a protected characteristic to the Bill is the
right way to go about
it. Dr.
Harris: I was going to come to all the good points that
the hon. Gentleman made and will deal with them in order to save time.
He made three points, although he might not have realised that he made
a third. The extra point is that part of the problem—unlike when
someone is terminally ill and refused life cover, for example—is
that even for single allele conditions the actuarial calculations are
incredibly complex because many predictive genetic tests are simply not
as predicted in all
cases. For
example, the genetic condition may not be fully penetrative—it
does not exhibit itself physiologically in every case in the same way
in every person. It is complex, yet insurance companies may generalise
and say, “We know that if we exclude these people we are at less
risk of making an adverse offer and paying out a claim. Therefore, we
can cut the premiums for everyone else—those who are not
afflicted by this genetic predisposition.” If it were an exact
science, there would be a stronger case for it, but it inevitably leads
to rough approximations and generalisations, which are part and parcel
of why this is unfair.
One key reason
that this differs from having the condition when considering insurance
is the fact that there is a significant public policy interest in
encouraging appropriate people to have appropriate tests in their best
interests and to ensure that family members, where appropriate and with
consent, also have the information to help them to judge their genetic
susceptibility. As
the moratorium is, by definition, not permanent, if people worry that a
test will be used against them, that is a huge disincentive for those
already at a health disadvantage to access the technology, have the
test and get early intervention and lifestyle advice where that is
relevant. There is a real problem of deterring people from accessing
testing, as well as a problem for researchers who have an ethical
obligation to ensure that those taking part are not damaged by taking
part in research. If there is any concern that life chances will be
harmed by taking part in the research and being randomised to the test,
for example, the risk of randomisation cannot be offered with equipoise
because the researcher knows there is a chance of discrimination. It
holds back
research. I
hope the Committee will accept that these are serious issues that have
to be considered. This is not simply a matter of saying that people are
not yet ill and that we can cross that bridge when we come to
it—when they are disabled in employment protection terms or when
they are symptomatic and insurance companies must be allowed to
distinguish between people with serious conditions and those without.
We are not suggesting that insurance companies should not be able to
distinguish between people with symptomatic serious
conditions.
There is an
argument, which we heard in the caste debate, that there is not a huge
amount of evidence that this discrimination is taking place. While
there is a moratorium in respect of insurance, it may well be argued
that there is not much discrimination. However, as I said in respect of
gender identity—it is well recognised—anti-discrimination
law should lead, not always just respond to established poor practice.
It is there not only in case of discrimination, so that people
can take advantage of it, but as a deterrent to discrimination that
might occur. As we know from previous anti-discrimination law, it also
enables data to be collected because there is a legal framework.
Finally, in this case there are the positive public health and public
policy advantages of not deterring people from taking the relevant
steps. In
the insurance field, for example, relying on a moratorium does not give
the required long-term assurances—this applies to employers as
well as insurers. The United States is a country where there is great
support for financial services, including insurance companies, some of
which have done better than others in recent years. Nobody could say
that the United States is hostile to the purchase of private insurance
or that its people are not interested in trying to make as much money
as possible out of the system—consistent with the law, of
course, at least in most cases, and consistent with the ideals of the
American
dream. In
the United States, research has been carried out to check whether there
would be significant gaming—adverse selection, I think it is
called in actuarial circles—to identify whether people who were
genetically at risk of serious disease would get insurance, up the
premium, have the test and not disclose the results, or if the test was
banned, take it anyway and screw the insurance companies. In the
research that I am aware of, it was not found that that is likely to
happen. People
with these serious conditions, or genetic susceptibilities to them,
have other things on their mind and there is a cap on the amount of
life insurance that people can get without providing the test. That is
another way forward—they can get a reasonable amount, but cannot
go for millions and millions—and it has worked
well. Members
of the Committee will be aware of the Genetic Information
Nondiscrimination Act 2008—an Act of the US Congress signed into
law by President George Bush on 21 May 2008, which prevents medical
advances in DNA testing from being adversely used by employers and
health insurance companies against people with a genetic predisposition
to particular health issues. I think that Act was passed by the House
of Representatives by 414 votes to 1, which, by any account, is a
significant margin. We would be fortunate to consider in the House
anything that attracted such overwhelming
support. That
Act refers to the use of family medical history—my understanding
is that if the insurance companies had not resisted the restriction of
the use of medical tests, they would probably have got away with still
being able to use family history—and I have included the term
“family medical history” in my probing
amendment. There
are positive public policy advantages in doing this and there is clear
evidence from other jurisdictions that it is felt to be necessary. We
should not have to wait for gross examples of such discrimination in
employment—that would put the onus on the victim to come forward
before we would act—when there is a clear argument that the
measure might be used. It would do away with the need for people to
worry about whether the moratorium will continue past 2014 and give
certainty to the insurance industry that this is not a path that it
needs to spend a lot of time investing in and that we will share the
risk. I speak as someone who is willing to pool that risk so that a
genetic underclass is not created. I urge the Minister and the
Committee to give consideration to the amendment.
The
Solicitor-General: We reflected on this and concluded that
there is no reason to include the amendment in the Bill. There is no
clear evidence of a problem. All the examples sent to us that might be
termed genetic predisposition would already be covered by disability
discrimination. The hon. Gentleman referred to the insurance
industry’s voluntary measure to guard against the inappropriate
use of genetic tests, which could lead to certain people being asked to
pay higher premiums. That is in place and will last until 2014. It is
working well and he has not suggested that it is
not. The
other relevant area is employment. The Human Genetics Commission
reported in 2006 that it had no evidence of employers using genetic
tests. The Information Commissioner has told employers that if they
plan to use genetic tests, they must inform the Human Genetics
Commission. These measures seem to be working well and are
sufficient. 3
pm
Mr.
Harper: On the moratorium and the fact that it is in place
until 2014, is the Minister able to give the Committee any information
about what the Department of Health’s view is on what the next
steps might be, or are we at a stage where it is too early to think
about that? Given that it is working well, is the Department of Health
thinking of rolling that forward, perhaps indefinitely, or is it
thinking about a legislative solution along the lines that the hon.
Member for Oxford, West and Abingdon has spoken
about?
The
Solicitor-General: I will check that and drop the hon.
Gentleman a line, so that I can give him a complete
answer.
Dr.
Harris: The Minister rattled through that response very
quickly, but she said that the moratorium was working well. The fact is
that it is a moratorium and at some point, a future Government may end
it. That would mean that people would be exposed to being required,
before they can get insurance, to disclose any genetic test that they
have had.
In addition,
it is possible that employers may seek to take advantage of what is
becoming a more available technology. Other than legislation in this
area, I would like to know what future-proofing the Minister can
provide that would prevent employers from discriminating against people
who would not fall within the disability definition because they are
healthy, are asymptomatic but have a genetic predisposition, or do not
consent to their information being used by the employer. In itself,
that is sufficient to trigger a problem for individuals. I would be
grateful if she could provide some information on
that.
The
Solicitor-General: I rattled through the response quickly
because I thought that we were finishing at 3 o’clock and I
wanted to try to complete this section. Now we have more time, I am not
going to say it all again, but I can slow my pace. The hon. Gentleman
has not suggested the moratorium is not working well. Negotiations on
an extension or whatever is to follow are for the future. In our view,
it is not appropriate to deal with that in the
Bill. The
Human Genetics Commission, to which the hon. Gentleman has referred
quite a lot, found no evidence of employers using genetic tests. The
Information
Commissioner has made it clear that employers must inform the genetics
commission if they plan to use them. That would trigger further
inquiry. Again, he has not suggested that these arrangements are not
working well and are insufficient. This is
perhaps a key point for me. If there were evidence of a
problem—I make it clear that there is not scant or limited
evidence, but no evidence, despite being open-minded about looking for
it—it is by no means certain that discrimination law would be
the right way to deal with it. It would almost certainly be better
tackled through the use of data protection legislation, prohibiting the
use of genetic test information in setting insurance premiums and
vetting for employment, so I hope that the hon. Gentleman will withdraw
his amendment.
Dr.
Harris: First, I would like to apologise to the Committee
if there was a 3 o’clock time limit that I was not aware of. The
Government Whip has been extremely
helpful—
The
Solicitor-General: It was my
mistake.
Dr.
Harris: Had there been such a time limit, I would have
spoken even more quickly, although I could not compete with the
Minister.
I understand
the thrust of what the Minister was saying. It would be impossible to
respond to all her points, so the best thing I can do is take them away
to discuss them with the Human Genetics Commission and others with a
particular interest in this matter. We will see if there is a necessity
to bring the matter back for further debate. In the meantime, I beg to
ask leave to withdraw the amendment.
Amendment, by leave,
withdrawn.
Lynne
Featherstone: I beg to move amendment 113, in
clause 4, page 4, line 15, at
end
insert— ‘belonging
to a disadvantaged socio-economic
group’. An amendment
to outlaw discrimination against a person on the basis of their
belonging to a disadvantaged socio-economic
group. The
amendment would outlaw discrimination against a person on the basis of
their belonging to a disadvantaged socio-economic group. It is to probe
the Minister because we have a socio-economic duty, but no strand, or
no protected characteristic for it to work with. As we have said, the
socio-economic duty is weak. We think that the amendment might give it
real teeth. In providing for a protected characteristic, people from
disadvantaged socio-economic backgrounds would be protected from direct
and indirect discrimination. The amendment would make it clear that we
believe that socio-economic disadvantage is one of the great strands of
inequality.
Mr.
Harper: I will not rehearse all the arguments about the
socio-economic duty; we did so at length this morning. However, if a
protected characteristic were added and, effectively, called a
“disadvantaged socio-economic group”, how would one
define such a group? Would it be only people who were poor, or would it
be a more complex definition? I do not see a definition in the
amendment.
Lynne
Featherstone: I have to say that I have not defined that
in an explicit way at this point because I want to probe the
Minister’s thinking about whether the Government would even
consider such a characteristic. Obviously, it would require a great
deal of thought and work. There would be a number of legitimate
concerns that such a protected characteristic would have unintended
consequences. However, as other Members have said, that is always the
case when new discrimination law is introduced. With will, the Minister
might be persuaded to ask the Government Bill Office to establish what
those unintended consequences might be, and what would qualify a person
to be someone from a disadvantaged socio-economic background. Would it
be simply poverty? The definition would be within the sense and meaning
that the Government place on the socio-economic
duty. Emily
Thornberry (Islington, South and Finsbury) (Lab): I hope
that the hon. Lady will not take this the wrong way, but is it possible
that the amendment is a clear characterisation of what it must be like
to be in a political party that has no chance of having any power? To
put forward something that has such a vague aspiration and then ask the
Government to go away and sort it out seems unnecessary; there is no
background to it and it is not
practical.
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