Lecture 6 Genetic discrimination

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Lecture 6Genetic discrimination
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Is everybody against genetic discrimination?

• The media often discuss genetic discrimination
  (GD), typically with a critical attitude GD is
  regularly condemned as being unfair, immoral
• Did you ever hear anyone defending genetic
  discrimination?
• Do you remember ever reading the opinion that
  genetic discrimination is a good thing and that
  we should protect the right of genetic
  discrimination?
• Probably not. But why is there so much discussion
  about an issue on which everyone agrees?

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The word discrimination

• In fact, some people do advocate genetic
  discrimination, but not under that name.
• The word discrimination has in itself a
  distinctly negative overtone, especially when a
  criterion of discrimination is explicitly
  mentioned.
• It is rare that the word has a positive meaning
  e.g., a discriminating mind.
• But when the word discrimination is linked with
  a criterion of discrimination, the negative
  message is directly implied.

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The word discrimination (cont.)

• To most people it would sound almost
  self-contradictory to say They are
  discriminating on the basis of Xbut this is
  completely OK.
• Why? It seems that discriminating on whatever
  basis (height, age, race, genetic
  characteristics) is automatically regarded as
  wrong simply because the term discrimination on
  the basis of X is only used to refer to the
  practices regarded as improper.
• If one did not object to X as a criterion of
  selection, normally one would not describe the
  practice as discrimination-on-the-basis-of-X
  but rather as, say, selection-on-the-basis-of-X)
  .

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A condemnatory definition of GD

• We define genetic discrimination as drawing a
  distinction among individuals or groups plus an
  element of either irrationality or social
  unacceptability or both. (M. A. Rothstein M.
  R. Anderlik, in Genetics in Medicine 2001, p.354)
• When discrimination is defined in this way, the
  term clearly has a negative connotation
  genetic discrimination is a bad thing. (ibid.)
• After a few pages
• There are good ethical reasons for preventing
  genetic discrimination. (p.357)

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Bewitched by language?

• Imagine that someone presented the abortion
  debate as being about whether murdering babies
  should be allowed.
• Would the pro-choice side be happy with this?
• General advice to avoid begging the question,
  show that a practice deserves to be condemned
  before you describe it in condemning terms.
• With genetic discrimination, it is too late to
  change the terminology. But we should be aware of
  the bias built into the phrase.
• Most importantly, we should resist the temptation
  to regard GD as morally wrong before a convincing
  argument is produced for condemnation.

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What (if anything) is wrong with GD?

• No one should be denied health insurance because
  of predispositions found in their DNA. (F. C.
  Collins J. D. Watson, in Science, 31/10/2003)
• Any form of discrimination against a person on
  grounds of his or her genetic heritage is
  prohibited. (The Council of Europes Convention
  on Human Rights and Biomedicine, 1997)
• Any discrimination based on any ground such as
  genetic features shall be prohibited. (The EUs
  Charter of Fundamental Rights, 2000)
• For a long time people were denied insurance on a
  mere suspicion about what might be found in their
  DNA, and no one was particularly bothered about
  that!

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Family history vs. genetic tests

• Two sources of genetic information, two very
  different reactions. Why?
• Knowledge about genetic predispositions that
  comes from family history is typically indirect,
  probabilistic and quite limited.
• Knowledge obtained through genetic tests is
  direct, certain and potentially comprehensive.
• It is unclear how these differences could be
  relevant for morally opposite reactions to these
  two cases.
• Kitcher (1996) suggests that using the family
  history information is also ethically problematic
  but that it was tolerated just because of its
  narrow scope.

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Genetic tests a bigger threat?

• There is a lot of public nervousness and sense of
  urgency in dealing with genetic discrimination.
• Many countries and most U.S. states have laws
  against genetic discrimination.
• There is a push for federal legislation as well.
• The House of Representatives needs to approve
  the Genetic Nondiscrimination Act of 2003 as soon
  as possible. (Collins Watson, Science 2003)
• Genetic discrimination and health insurance an
  urgent need for reform, Science 1995.
• Before it's too late - addressing fear of
  genetic information, Science 2002.

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How bad is the situation already?

• Once all of this starts to really get going, and
  insurance companies begin demanding information
  on you from this and that sort of genetic test,
  some people are going to find that they can't get
  the insurance they need. Whenever I give talks on
  this I make this point, and invariably one or two
  people come up to me afterward and say, "I know
  somebody who..." and tells me a sad story about
  the system, about something like this that is
  happening already. People are finding that
  because of the genetic tests that they have been
  asked to take or that they actually have taken,
  their insurance is now over or changes
  drastically. (Kitcher 2001)

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I know somebody who

• There are almost no well-documented cases of
  health insurers asking for, or using, genetic
  test results in their underwriting decisions.
  (Hall Rich, AJHG, 2000)
• What emerges from those conversations is that
  the journalists are desperate to find, but have
  great difficulty in finding, citizens who will
  claim that they were victims of genetic
  discrimination. (Reilly 1999)
• I investigated whether any consumers had sued
  insurers alleging discriminatory practices in
  underwriting on the basis of genetic information.
  I found not a single case. (ibid.)

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The matter of definition?

• The inability to document GD is sometimes
  attributed to a too narrow definition of GD.
• It is objected that Hall Rich take into account
  only cases in which illness was in no manner
  manifested yet (Lemke 2005).
• Two alternative definitions (a) includes cases
  where the persons in question have already fallen
  ill, and (b) where the symptoms of the illness
  are very mild or do not constitute disability.
• The first (too narrow) definition is obviously
  preferable here. After all, health insurance is
  insurance against future illness!

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How to deal with the unjustified fear?

• If there is so much public alarm in connection
  with a practice that seems to be infrequent or
  even largely non-existent, what is the most
  reasonable response?
• Are unfounded public fears best treated by
  passing stricter laws against these mostly
  fanciful threats?
• Perhaps not.
• Consider an analogous situation would those
  living in terror of alien abductions be really
  reassured if a new federal law were introduced
  with harsh penalties for keeping people inside
  flying saucers against their will?
• Or would this just increase their paranoia?

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Genetic injustice?

• It seems to me obvious enough that the potential
  misuse of genetic information by insurers is
  troublesome first and foremost because it is
  unfair that some people are worse off than others
  due to bad genetic luck. Justine Burley
• Whereas individuals can exercise choices about
  whether to smoke, how much exercise they get, and
  how much fat is in their diets, they cannot
  change the contents of their genes. To make
  employment or insurance decisions on the basis of
  genetic characteristics determined at the moment
  of conception is to discard cherished beliefs in
  justice and equality. The Council of Responsible
  Genetics

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Genetic advantage

• In many cases we tolerate differential rewards
  that depend on genetic (undeserved!)
  characteristics (intelligence, musical or
  athletic ability, etc.).
• Introducing social compensation for those unlucky
  in the genetic lottery is a very radical
  political idea.
• Even if it is defensible, the argument would
  transcend the discussion of genetic
  discrimination.

G
(T)
A Genetic discrimination direct
(G)
T
A Genetic discrimination indirect
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Adverse selection

• Genetic privacy ? an epistemic asymmetry (between
  insurers and their customers).
• Under the regime of genetic privacy, people who
  learn that they are at increased risk of illness
  could hide this information from insurers, and
  buy extensive health or life insurance for a low
  price.
• As a result, insurance companies would face
  increased costs, and to stay in business, they
  would have to respond by raising the standard
  premium.
• This would in turn make many healthy people leave
  the insurance market, which would push the
  premiums even higher, which would

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Trade-off

• Adverse selection is not a serious threat yet.
• But neither is the invasion of genetic privacy.
• The two are connected if the epistemic asymmetry
  puts a subject at a significant advantage
  vis-à-vis the insurer, then (and only then) there
  will be two simultaneous effects
• (a) a danger of adverse selection, and, because
  of that,
• (b) the insurers attempt to get genetic
  information.
• So, the protection of genetic privacy is either
  unnecessary or has both effects (positive and
  negative).
• Will protecting privacy do more good or bad?

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The dilemma of genetic tests

• Take a person who is at increased risk for a
  certain disease because of a family history of
  that disease.
• The dilemma if a genetic test is conducted,
  should the information about the result be
  private?
• Yes, because its personal.
• No, because the result affects the insurance
  company as well.
• The Nuffield Council on Bioethics proposes a
  compromise The information should be shared with
  the insurance company, but the insurance premium
  should not be raised if the test is positive.

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A hypothetical example

• A disease that costs an insurance company 50,000
• 200 people with family history and risk level of
  0.05
• Not tested (20) pay additional 2,600
• Test positive (4) pay additional 50,000
• Test negative (76) pay the regular premium

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The same example the Nuffield scenario

• A disease that costs an insurance company 50,000
• 200 people with family history and risk level of
  0.05
• Not tested (20) pay additional 2,600
• Test positive (4) pay additional 2,600
• Test negative (76) pay the regular premium

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Everyone will be uninsurable!

• Because of the work currently being done on the
  human genome project, it is likely in the next
  years that every one of us will have a
  preexisting condition and be uninsurable.
  (Hillary Clinton)
• Insurance companies function by pooling the risk
  for different groups, so when you start having
  individuals who are getting tested for genetic
  mutations, you cant really give insurance to
  anyone because everyone will have some level of
  risk. (Sujatha Byravan, President of the Council
  for Responsible Genetics)

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Can genetic discrimination lead to racism?

• Since certain genes (including those for cystic
  fibrosis, sickle cell anemia, thalassemia) are
  more frequent in certain racial and ethnic
  groups, or among people of certain provenance,
  actuarial fairness can easily lead to thinly
  disguised racial or ethnic discrimination. Onora
  ONeill
• A policy cannot be condemned as being racially
  discriminatory just because it has different
  impact on different racial groups.
• The necessary component of condemnation must be
  that there is an intention to harm these groups.
• Actuarial fairness lacks this component.

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Genetic discrimination racist motivation?

• In the 1970s the Air Force Academy stopped
  admitting people with the sickle-cell trait.
• The sickle-cell trait is much more frequent among
  blacks (around 8) than among whites.
• The high incidence of sickle-cell trait in the
  National Football League and the formation of an
  exclusionary policy on the basis of flimsy
  evidence very likely have a common explanation
  In the United States the sickling allele, and
  thus both sickle-cell trait and sickle-cell
  anemia, is most prevalent among Americans of
  African descent. Kitcher 1996

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Are genetic and racial discrimination similar?

• Just as we have addressed discrimination based
  on race, gender, and age, we must now prevent
  discrimination based on genetic information. (G.
  W. Bush)
• The problem with Bushs analogy is that we
  condemn discrimination when it is based on an
  irrelevant characteristic.
• Rejecting a student because of race or gender is
  unfair because gender and race are in themselves
  irrelevant for academic ability.
• But genetic characteristics may often be relevant
  for insurance and employment purposes.