Con 3: Mr' Johanssons Defense

1
Con 3 Mr. Johanssons Defense

• Presented by David Fry, Emily Sheehy, Rachel
  Rienstra, and Krissy Simmons
• December 6, 2005

2
The Case of Johansson

• DeCODE database freely accessible to the public
  without consent
• Information obtained by employer
• Fired because of genetic risk
• Suing for infringement of privacy

3
Thesis and Argument

• DeCODE should be held responsible
• Takes too much and gives too little
• Privacy and discrimination
• Genetic information as private property

4
Philosophical Foundation

• Natural law (Deontological)
• Individuals have inherent right to nonmaleficence
  and autonomy
• Nonmaleficence The principle of non-harming
• Autonomy Individual freedom of choice
• Johansson harmed as direct result of the
  violation of his autonomy
• Public availability violates self-determination
• Johansson was denied a choice in the public
  sharing of his genetic information

5

• DeCODE takes too much from the people of Iceland
  and gives too little back to them and to science

6
Argument 1

• DeCODE genetics will know more about an Icelander
  then they will know about themselves
• DeCODE is dealing with very complex scientific
  information
• Myocardial infarction, leukotriene synthesis,
  myeloperoxidase, etc.

7
DeCODE takes away too much privacy for private
gain

• Stefansson has entire genealogical records/family
  trees from residents practically all the way back
  to the 1st Viking
• Every patient's medical history, especially major
  illnesses, since 1915
• DNA samples of willing people traceable with just
  a number

8

• Stefansson DNA database will cover 90 percent of
  the Iceland population
• DeCODE has already computerized the family
  histories of three quarters of the current
  population of 800,000 Icelanders (Binyon, 1999)

9

• In Iceland, we have the opportunity of looking
  at every single individual who lived to a certain
  age. We know when they were born and when they
  died, and it allows us to do, for the first time,
  a population-based study of longevity." (Lyall,
  1999)

10
Why is this a problem?

• People could be traced to relatives they didn't
  know existed (NOVA, 2001)
• The reputations of well-respected individuals
  could be ruined if it is discovered that a
  mutation in their DNA caused hereditary diseases
  in later generations (Binyon, 1999)

11
Imbalance of Power

• The industry has a significant amount of
  information about an entire group of people
• The potential for control and manipulation of
  such information
• The potential to influence the population's
  personal and social life
• The information on Icelands entire population is
  in the hands of one entity

12
Argument 2

• DeCODE gives too little back to the nation and to
  science
• The nation will suffer because future generations
  will not be able to decide for themselves
• It seems that deCODE is more interested in the
  financial aspects and not the scientific
  advancement
• It does not seem that any major new drugs have
  arisen because of the information that deCODE has
  taken from the Icelanders.

13

• It does not seem that enough good will come out
  of it to compensate the stresses that may arise
  due to how much information is available to the
  public
• Family secrets may leak out
• Discrimination may occur
• People may get fired, such as Mr. Johansson
• Families or friendships may break up

14
Principles from Natural Law

• Autonomy violated because people would not choose
  to have their most personal secrets leaked to the
  public
• Nonmaleficence violated in cases in which people
  are directly harmed by publicly available
  information

15

• DeCODE makes private information available to the
  public, which can lead to cases of discrimination

16
Problem 1 Privacy Violated

• Individual privacy is impossible to guarantee
• Computerized encryption methods
• Patients will become less willing to divulge
  information to their doctors
• The right to tell others information about
  ourselves should be ours alone

17
Problem 1 Privacy Violated

• Many other companies are in cooperation with
  deCODE
• Economic and financial interests vs. individual
  rights
• Access to the database is widespread
• Many companies are internationally based

18
Problem 2 Discrimination

• As regards normal (i.e., healthy) individuals
• Life, health, disability insurance issues
• Racial discrimination
• Job discrimination
• Genetic discrimination
• Rooted in genismThe theory that distinctive
  human characteristics and abilities are
  determined by genes. (Annas, 1999)

19

• The geneticists have said that understanding
  the genomic code will enable us to understand
  life at the molecular level. But we do not live
  life on the molecular (or atomic or subatomic)
  level, but as full-bodied human beings. It is
  this reductionistic view of humans as a
  collection of genes that is at the core of
  genism. (Annas, 2001)

20
Problem 3 Human Rights Issues

• How do we make sure people understand?
• DNA usage by deCODE
• The science behind the database
• How do we protect the privacy of the samples?
• Who owns the DNA after it enters the database?

21
Principles from Natural Law

• Autonomy violated by disallowing individuals the
  choice to keep their personal information private
• Nonmaleficence violated by the direct harm
  arising from this public information, as in Mr.
  Johanssons case

22

• The Implications of Genes as Private Property

23

• Genes are one of the most intimate, personal
  parts of a persons life
• Reveal a persons essence
• Should be treated sensitively (Greely, 1998)
• Genetic information should be respected as ones
  private property and should be guarded against
  unjustified intrusion.

24

• Physicians in Iceland agreed
• 1/3 of Icelandic doctors sent a petition to the
  government declaring that they would not submit a
  patients private property unless the patient
  requested (NOVA, 2001 Coghlan, 1999 Palsson
  Rabinow, 1999).

25
Mannvernd

• Is taking deCODE to court for violating
  Icelanders' right to privacy because of Protocol
  1, Article 1 from the European Convention on
  Human Rights
• Every natural or legal person is entitled to the
  peaceful enjoyment of his possessions (Overby,
  1999 HRN, 1998)

26
Principles from Natural Law

• Autonomy violated by taking an individuals most
  private property, their genetic information, and
  making it publicly available without giving them
  a choice
• Nonmaleficence violated by sharing this
  information which could indirectly cause great
  harm to an individual

27
Conclusion

• DeCODE should be held responsible
• Takes too much and gives too little
• Privacy and discrimination
• Genetic information as private property

28
Returning to Mr. Johansson

• Genes and genetic information should not be
  commodified or analyzed without express
  authorization (Annas, 2001 Lyall, 1999)
• The mishandling of Mr. Johanssons genetic
  information by deCODE violates the natural law
  principles of nonmaleficence and autonomy
• As the responsible party, deCODE is ethically
  obliged to incur Mr. Johanssons financial damages

29
References

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  (6)3181565 http//bmj.bmjjournals.com/cgi/content
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• Annas, G. J. (2001). Genism, Racism, and the
  Prospect of Genetic Genocide. UNESCO 21st Century
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• Arledge, E., Cort, J. (2001). NOVA Cracking
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• The Population Approach 2005
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