Who Owns My Genes

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Who Owns My Genes?

• Pattle Pun,
• Professor of Biology,
• Wheaton College,
• Wheaton, IL 60187
• .

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Background information

• Iceland has decided to become the first country
  in the world to sell the rights to the entire
  populations genetic code to a biotechnology
  company, deCODE Genetics.
• Icelands parliament has passed a law to allow
  deCODE to hold an unusual 12-year monopoly on the
  data marketing rights of her people.
  
• The striking uniform DNA of Icelands population
  of 270,000 has provided an invaluable resource
  for studying human genetics, leading to the
  discovery of the genetic bases for some
  hereditary diseases such as Alzheimers,
  Schizophrenia and Osteoporosis.

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Scenario

• An Icelander, Mr. Thornstein Johansson is going
  to court to file a suit against the State for
  infringement of the privacy of his genome and
  genealogical data.
• Through the freely accessible database made
  available by deCODE to the Icelandic public that
  certain genetic risk of Mr. Johansson to his
  company made known from the database without his
  informed consent, he was fired from his job of
  25 years.

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Icelands Population

• Homogenous Population
• Vikings
• 293,966 (July 2004 est.) residents

http//www.nytimes.com/libaray/national/science/02
1699sci-ireland-genes.html http//www.cia.gov/cia
/publications/factbook/geos/ic.html
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Icelands Health Care System

• Universal, state-financed health care system
• Average Life Expectancy
• total population 80.18 years male 78.18 years
  female 82.27 years
  
• Infant mortality rate
• 3.31 deaths/1,000 live births
• Genealogical records
• http//www.nytimes.com/libaray/national/science/02
  1699sci-ireland-genes.html
  
• http//www.cia.gov/cia/publications/factbook/geos/
  ic.html
  

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• Since unemployment is a chronic problem in
  Iceland, Johansson is asking for a ruling against
  the State for selling the property rights of his
  genome to deCODE and that he be compensated for
  the loss of his job as a direct result of the
  infringement of his property right to his own
  genome.
• The judge has to decide what are his rights. The
  prosecution and the defense have to decide what
  witnesses to call upon to support or refute the
  case.
• The students are to organize a court of law in
  which a judge and a jury of several people are
  needed. Then they will perform role plays for the
  prosecution and the defense that will call upon
  the following witnesses to testify
• A decision will be rendered by the judge after
  due consideration of all the arguments with
  reasoning given based on ethical principles.
  

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Pros 1

• deCODE Genetics, www.decode.com, based in
  Reykjavik, Iceland, is conducting research into
  the inherited causes of common diseases.
  
• Through its population-based approach and
  data-mining techniques, deCODE seeks to turn raw
  genomic data into production and services for the
  health care industry.

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Pros 2

• Hoffman-La Roche, headquartered in Basel,
  Switzerland, is one of the worlds leading
  research-oriented healthcare groups in the fields
  of pharmaceuticals, diagnostics and vitamins.
• Roches innovative products and services address
  prevention, diagnostics and treatment of
  diseases, thus enhancing peoples well-being and
  quality of life. Roche has approximately 62,000
  employees and sells its products in over 170
  countries.

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• In the first half of 2000 the company reached
  sales of 11.7 billions and a net income of 1
  billion and invested 1.0 billion in Research and
  Development.
• Research at Roche in focusing on disease with
  high unmet medical need in the areas of the
  central nervous system, genitourinary diseases,
  metabolic diseases, inflammation and bone
  diseases, oncology and vascular diseases as well
  as viral diseases.

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Pros 3

• The government of Iceland controls a country with
  a strong health care system. It has extensive
  record-keeping as well as genealogical records
  that go back hundreds of years. It supports the
  genomic plan because it is perceived as striking
  a balance between the rights of the citizenry and
  the needs of science and thinks the potential
  advantages will outweigh the risks involved.

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Cons 1

• Electronic Privacy Information Center, based in
  Washington DC, speaks for the privacy concerns of
  Americans and others.
  

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Cons 2

• Representatives of a group of concerned
  scientists and physicians, a vocal group in
  Iceland, although comprised of a minority amongst
  their fellow countrymen, garners the support from
  a worldwide network of like-minded privacy
  advocates.

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Cons 3

• Group representing Mr. Johansson who was a
  dedicated worker for his Company for 25 years.
  Despite the chronic unemployment problem of
  Iceland, he was able to keep his job for so long
  because of his faithfulness to his duties.
  However, through the freely accessible database
  made available by deCODE to the Icelandic public
  that certain genetic risk of Mr. Johansson to his
  company made known from the database without his
  informed consent, he was fired from his job

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Pros

• Icelands population presents a tantalizing
  opportunity for those who study genetics because
  all of that blond hair and blue-eyes reflects one
  of the most remarkably homogeneous populations in
  the world.
• The original blend of 9th century Norse and
  Celtic stock has been largely unchanged, and that
  gene pool was further restricted by bouts of
  plague, famine and volcanic eruptions.

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• Iceland has a strong health care system with
  extensive record-keeping, as well as genealogical
  research that go back hundreds of years, it
  offers tremendous potential for ferreting out the
  relationship between the genetic and
  environmental origins of disease.
• Researchers will be able to sift through the
  data to uncover medical insights in a systematic
  manner.

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• The company has promised to collect the data
  anonymously. It has pledged to program the
  computers to produce no fewer than 10 records for
  any query so that the computers can never
  identify an individual.
• Removal of identifying features of peoples
  names, encrypting the data three separate times
  and limiting access to the database are amongst
  the safety measures.

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• Pharmaceutical scientists acknowledged the
  potential for abuse but assure the public that
  everything possible is done to ensure the privacy
  of the individuals is maintained. They have no
  interest in individual data but rather
  statistical relationships in large populations.
• Icelanders can allow the collecting of their
  blood for DNA analysis within 6 months, after a
  period in which they may decline to participate.
  DNA obtained from blood samples will be gathered
  only with the explicit permission of the subjects.

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• The urgency of finding cures for genetic disease
  should not be ignored.
  
• It is a careful balance between the rights of the
  citizenry and the needs of science. The unified
  health database will improve delivery of health
  services.
• Iceland is the worlds oldest democracy and it
  has decided by the majority to adopt the plan.

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• Icelands support for biotechnology research will
  create opportunities for her own scientists who
  have traditionally left for better jobs in
  foreign institutions.
• Roche has agreed to pay deCODE as much as 200
  million over 5 years if deCODE can identify the
  genes for a list of 12 of its target diseases. It
  also pledged to provide free to Icelanders any
  medicine it may develop from deCODEs work.

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• It would be unethical not to try to use the
  unique resources that Iceland has to try to
  improve the health of Icelanders and hopefully of
  others.
• It is paradigmatic shift in medicine in the study
  of disease.
  
• It is done in accordance with internationally
  accepted ethical principles.

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Cons

• The Icelandic action is unethical and
  unrealistic. The genetic database mining project
  has dubious purposes. Once its nature is better
  understood, doctors and patients will refuse to
  cooperate.
• Presumed consent does not necessarily represent
  informed consent.
  

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• The data-base mining could make the most private
  details of individual lives public.
  
• People with mental illness or other health
  problems could be stigmatized, perhaps suffering
  job discrimination.
  
• Patients may become less willing to divulge
  personal information to their doctors. And in a
  country where some estimates say that about 10
  percent of the population may have been born out
  of wedlock, long-held family secrets could leak
  out.

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• There are potential risks of efforts to mine and
  refine personal data. Turning the population into
  electronic guinea pigs is not ethical.
  
• The plan takes away too much privacy for private
  gain and gives too little back to the nation and
  to science.
  
• When you put genealogical information into the
  databank and also genetic data, the databank
  knows more about you than you know about
  yourself.

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• How the DNA will be collected or how much
  information will be stored in the database are
  not made known until a government-created
  committee makes the guidelines.
• It is impossible for the database to guarantee
  peoples privacy, even with sophisticated
  computer protections.
  
• Sensitive information could be traced back to
  people and used against them in hiring or other
  activities.
  

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• The pay-as-you go research concept damages the
  spirit of science, in which knowledge should be
  freely shared.
  
• Trust between patients and physicians will
  diminish and maybe disappear if people believe
  that every fact about them will be entered into
  the database.

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Philosophical principles
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Philosophical principles
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Philosophical principles
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Philosophical principles
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