Pro 1: Allen, Chae, Chin

1
Pro 1 Allen, Chae, Chin

• State vs. Johansson

2
Mr. Thornstein Johansson
State of Iceland
3
Introduction

• Security Measures Taken by deCODE
• Preservation of Autonomy and Informed Consent
• Future of Medicine

4
Purpose and Goals of deCODE Genetics

• Identifying features not important
• Role in tracing genetic basis for hereditary
  diseases to improve health care

5
Security of Data

• Many measures have been taken in order secure
  privacy of genetic information

The company will use every single method that
exists in the world to maintain the privacy of
the database... - Kari Stefansson
deCODE Genetics
6
Ethical Issues

• Utilitarianism
• Ethical issue lies with employer for using the
  information improperly

7
deCODEs Policy

• Participants are volunteers
• Informed Consent

8
Participants Are Volunteers

• Participants are invited not forced to take part
• Over ninety percent of people invited to take
  part in deCODE's research in Iceland do so.
• From deCODEs WebsiteThe Population Approach

9
Informed Consent

• DNA information is not taken without informed
  consent of the participant
• The far more sensitive genetic information --
  DNA obtained through Icelanders' blood samples --
  will be gathered only with the explicit
  permission of the subjects.
• A Country Unveils Its Gene Pool and a Debate
  Flares from NY Times
• All genetic material and medical information
  used in our research are obtained in accordance
  with the most rigorous international standards
  for patient consent.
• From deCODEs websiteThe Population Approach

10
Preservation of Science

• Data or information cannot be conveniently
  deleted
• Data will be kept anonymous, confidential and
  treated with respect

11
Ethical Principles

• Kant
• Volunteer
• Informed Consent
• Preserve life

12
The Problem

• Treating the symptoms of disease, and not the
  problem
• The primary reason poor understanding

13
The Solution

• deCODE Genetics
• Unraveling complexity of genes and diseases
• Identifying key genes involved in the
  predisposition to a given disease
• Drugs made to target and effectively disrupt key
  elements in biological pathway of the disease

14
So Far

• deCODE has been a SUCCESS
• Isolated 15 genes
• Drug targets in 12 common diseases
• Mapped genes in 16 more diseases

15
Gene Research

• Genealogical data of Iceland linking together the
  entire present-day population and stretch back
  over 1100 years
• 100,000 volunteers from Iceland in our gene
  research in Iceland- more than 50 of the adult
  population

16
From Genes to Drugs
A Paradigm Shift in Medicine in the Study of
Diseases
17
Benefits

• 1. Enables trials that are smaller, faster, and
  more informative than traditional trials
• 2. Better risk management in the drug development
  process
• 3. Maximizing therapeutic potential of new drug

18
Examples

• Loci Identified
• Disease Genetics
• Identified
• Drug discovery
• and development

19
Utilitarian View

• It is unethical not to use the precious genetic
  resource of the Icelanders to improve their
  health and the health of others
• Benefits far out-way any negative consequences
• Minor sacrifices of a few to bring great benefit
  to many
• Icelanders are also being benefited!

20
In Conclusion

• The state cannot be held responsible for the
  manipulation of Mr. Johanssons genetic data.
• Preservation of the confidentiality of Mr.
  Johanssons genetic data.
• Autonomy and informed consent are upheld
• Potential future of health and medicine

21
Bibliography

• A Country Unveils Its Gene Pool and a Debate
  Flares, NY Times
• www.nytimes.com/library/national/science/021699sc
  i-iceland-genes.html
• Cracking the Code of the Life
  www.pbs.org/wgbh/noval/genome/program.html
• deCODE Genetics Website
• www.decode.com
• General Disease Facts and Statistics.
  http//www.schizophrenia.com/szfacts.htm
• Human Genomics http//images.google.com/imgres?i
  mgurlhttp//www.nature.com/genomics/images/ethics
  _200.jpgimgrefurl
• Munson, Ronald. Intervention and Reflection.
  Belmont, CA Wadsworth/Thomson Learning, 2004.