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Mortality in the Post-Genome World
• DNA has been called the “molecule of
life.” As such, it necessarily has
significance in a discussion of death
and mortality.
• Because of recent developments in the
genetic sciences, this significance is
growing rapidly, and will continue to do
so.
Mortality in the Post-Genome World
• Our increasing
understanding of
human genetics has
potentially profound
implications for
political, economic,
and personal life.
Life in the Post-Genome World
• It is critical that
citizens in a
democracy are able
to make informed
choices regarding
issues that may
affect all areas of
life.
Don’t Be Intimidated, Get Informed
Don’t Be Intimidated, Get Informed
• As genetic science
gains importance in
everyday life, it is
crucial that citizens
are informed about
the technologies that
impact their lives and
are able to engage in
informed dialogue
with the scientific
establishment.
Geneforum

Geneforum is an organization founded with a vision
of the future in which genetic science benefits
humankind, without compromising individual
liberties or discriminating against groups of people.

The organization’s mission is to promote civic
discourse about genetic policy developments
through public education, engagement, and
consultation.

501(c)(3) non-profit, non-partisan organization
Geneforum
Four core beliefs guide Geneforum’s activities:
1.
The health of a democratic society depends on robust
citizen participation.
2.
Public policy decisions (in genetics) will result in better
outcomes to the extent that they are based on both public
values and scientific knowledge.
3.
Informed dialogue leads to better understanding,
consensus building and a more stable environment for
commerce.
4.
Social structures are required to enable informed,
constructive dialogue.
Getting Informed
• What’s happening in Oregon?
http://www.geneforum.org
• Join the Conversation
http://www.pbs.org/fredfriendly/ourgenes/
• Quiz me!
http://www.pbs.org/fredfriendly/ourgenes/
what_do_you_know.html
DNA Evidence and Death Row
Pardons
DNA Evidence and Death Row
Pardons
• “In the U.S., as of June 2002, 108
people including 12 death row inmates,
have been exonerated by use of DNA
tests. The increasing use of DNA testing
to help confirm the innocence or guilt in
capital cases is one among many
reforms that will help ensure that
innocent people are not sentenced to
death.”
DNA Evidence and Death Row
Pardons
• http://www.aclu.org/DeathPenalty/Death
Penalty.cfm?ID=9315&c=65
• http://www.usatoday.com/news/nation/2
002/04/10/krone.htm
• www.thislife.org
4/19/02 Episode 210 “Perfect Evidence”
Police Misconduct and
Wrongful Convictions
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Police Misconduct
Racism
Mistaken Identity
False Confessions
Bad Lawyering
http://www.innocenceproject.org/causes
/index.php
Ethical Risks of Genetic
Reductionism: ‘Genetic Profiling’
Ethical Risks of Genetic
Reductionism: A New Eugenics?
Ethical Risks of Genetic
Reductionism: A New Eugenics?
Ethical Risks of Genetic
Reductionism: Invasion of Privacy
Genetically-Targeted Advertising
Genetically-Targeted Advertising
Implications for Health Care
• Health care is the field most closely
associated with human genome
research today.
• New genetic technologies could change
the ways we approach the insurance
industry, illness, reproduction, longevity,
and other areas in medicine.
Implications for Health Care:
Insurance and Managed Care
Implications for Health Care:
Reproduction
Implications for Health Care: Aging
Where are we?
• “As a civilization, we
know far less than one
per cent of what will
be known about
biology, human
physiology, and
medicine. My view of
biology is ‘We don’t
know shit.’”
-Craig Venter,
Celera Genomics
Where are we?
Today
• Specimens of human material, including specimens
containing DNA, are collected and stored annually
from 20,000,000 individuals in the US today
• Genetic test results can be used to predict future
health risks that might be of interest to others
• Genetic test results apply to a whole family and
therefore are of interest to others than the individual
patient
• Information from a genetic test can be kept in many
different places and under many different sets of
rules over which an individual has no control
(Used with permission from geneforum.org)
Where are we heading?
Genetic Predictions
By the year 2010
• Predictive genetic tests will be available for 25
conditions
• Interventions to reduce risk will be available for most of
these
• Gene therapy will be successful for a few conditions
• Many primary care providers will begin to practice
genetic medicine
• Pre-implantation diagnosis will be widely available, its
limits being fiercely debated
• Effective legislative solutions to genetic discrimination
and privacy issues will be in place in the U.S.
• Access to health care will remain inequitable,
especially in the developing world.
Genetic Predictions
By the year 2020
• Gene-based designer drugs for diabetes,
hypertension, etc. will be coming on the market
• Cancer therapy will be precisely targeted to
molecular fingerprinting of the tumor
• Dx/Rx pharmacologenomic approach will be standard
practice for many drugs
• Mental illness diagnosis will be transformed, with
new therapies arriving and societal views shifting
• Homologous recombination technology will suggest
that germline gene therapy could be safe
Source: Dr. Francis Collins, Director, NCHGR,
NIH
Genetic Predictions
By the year 2030
• Genes involved in the human aging process will have
been fully catalogued
• Clinical trials will be underway to extend
maximum human life span
• Full computer model of the human cell will replace
many laboratory experiments
• Complete genomic sequencing of an individual
will be routine, costing less than $1,000
• Major anti-technology movements will be active in the
U.S. and elsewhere
Genetic Predictions
By the year 2040
• Comprehensive genomics-based health care will be
the norm
• Disease predisposition will be determined (at birth?)
Individualized preventive medicine will be available
and largely effective (Illnesses will be detected early
by molecular surveillance)
• Gene therapy and gene-based drug therapy will
be available for most diseases
• The average human life span will reach 90 years,
stressing prior socio-economic norms
Source: Dr. Francis Collins, Director, NCHGR, NIH
(“Genetic Predictions” slides used with permission from geneforum.org)
Life in a Post-Genome World:
Benefits, Risks, and Obligations
• As genetic research progresses, each
citizen must take an active role in
ensuring the development of
– responsible research goals
– informed ethical decisions
– equitable sharing of benefits