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EMBRACING CHANGE: SOCIETAL AND WORKPLACE IMPLICATIONS OF THE HUMAN GENOME PROJECT. June 6, 2001 New Orleans AIHCE Alan E. Guttmacher, M.D. Senior Clinical Advisor to the Director

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embracing change societal and workplace implications of the human genome project

EMBRACING CHANGE: SOCIETAL AND WORKPLACE IMPLICATIONS OF THE HUMAN GENOME PROJECT

June 6, 2001 New Orleans AIHCE

Alan E. Guttmacher, M.D.

Senior Clinical Advisor to the Director

National Human Genome Research Institute National Institutes of Health

what we will consider
What We Will Consider
  • The “old genetics”
  • The “new genetics” - genomics
  • Genomic medicine
  • Implications for industrial hygiene
  • Implications for society
the old genetics
The “Old Genetics”
  • Involves conditions wholly caused by:
    • An extra or missing complete chromosome or part of a chromosome
      • e.g., Down syndrome
    • A mutation in a single gene
      • e.g., cystic fibrosis, Marfan syndrome, alpha1-antitrypsin deficiency, sickle cell disease
the old genetics4
The “Old Genetics”
  • These conditions
    • Are of great importance to individuals and families with them
    • But, are relatively rare
    • Most people not directly affected
    • Thus, genetics played small role in healthcare, industrial hygiene and society
9 of the 10 leading causes of mortality have genetic components
> 9 of the 10 Leading Causes of Mortality Have Genetic Components
  • 1. Heart disease (31.0% of deaths in ‘98)
  • 2. Cancer (23.2%)
  • 3. Stroke (6.8%)
  • 4. COPD (4.8%)
  • 5. Injury (4.2%)
  • 6. Pneumonia/Influenza (3.9%)
  • 7. Diabetes (2.8%)
  • 8. Suicide (1.3%)
  • 9. Kidney disease (1.1%)
  • 10. Chronic liver disease (1.1%)
genomic medicine
Genomic Medicine
  • About conditions partly:
    • Caused by mutation(s) in gene(s)
      • e.g., colon cancer, breast cancer, atherosclerosis, inflammatory bowel disease, diabetes, Alzheimer disease, mood disorders, many others
genomic medicine7
Genomic Medicine
  • About conditions partly:
    • Caused by mutation(s) in gene(s)
      • e.g., colon cancer, breast cancer, atherosclerosis, inflammatory bowel disease, diabetes, Alzheimer disease, mood disorders, many others
    • Prevented by mutation(s) in gene(s)
      • e.g., HIV (CCR5), ?atherosclerosis, ?cancers, ?diabetes, many others
genomic medicine8
Genomic Medicine
  • These conditions
    • Are also of great importance to individuals and families with them
    • But are quite common
    • Directly affect virtually everyone
    • Will make genetics play large role in healthcare, industrial hygiene, and society
genomic medicine9
Genomic Medicine
  • Will change healthcare
genomic medicine10
Genomic Medicine
  • Will change healthcare by... creating a fundamental understanding of the etiology of many diseases, even “non-genetic” ones
genomic medicine11
Genomic Medicine
  • Will change healthcare by...
    • providing knowledge of individual genetic predispositions via microarray and other technologies
genomic medicine12
Genomic Medicine
  • Knowledge of individual genetic predispositions will allow:
genomic medicine13
Genomic Medicine
  • Knowledge of individual genetic predispositions will allow:
    • Individualized screening, e.g., mammography schedule
genomic medicine14
Genomic Medicine
  • Knowledge of individual genetic predispositions will allow:
    • Individualized screening
    • Individualized behavior changes, e.g., informed lifestyle choices
genomic medicine15
Genomic Medicine
  • Knowledge of individual genetic predispositions will allow:
    • Individualized screening,
    • Individualized behavior changes
    • Presymptomatic medical therapies, e.g., antihypertensive agents before hypertension develops
genomic medicine16
Genomic Medicine
  • Will change healthcare by...
    • providing knowledge of individual genetic predispositions
    • creating pharmacogenomics – including individualized medications
genomic medicine17
Genomic Medicine
  • Will change healthcare by...
    • providing better understanding of non-genetic (environmental) factors in health and disease
genomic medicine18
Genomic Medicine
  • Will change healthcare by...
    • providing better understanding of non-genetic (environmental) factors in health and disease
    • emphasizing health maintenance rather than disease treatment
implications for industrial hygiene
Implications for Industrial Hygiene
  • Workplace safety
  • Research
implications for industrial hygiene20
Implications for Industrial Hygiene
  • Workplace safety
    • understanding workplace risk to the individual will become
      • technically more feasible
      • ethically more worrisome
implications for industrial hygiene21
Implications for Industrial Hygiene
  • Workplace safety
    • understanding workplace risk to the individual will become
      • technically more feasible
      • ethically more worrisome
    • you will have role helping manage individual genetic risk, as you already help manage other risk
implications for industrial hygiene22
Implications for Industrial Hygiene
  • Workplace safety – the interplay of genes and environment
    • e.g., asthma
implications for industrial hygiene23
Implications for Industrial Hygiene
  • Research
    • environment-gene interaction studies
    • public policy studies
some implications for society
Some Implications for Society
  • May include characteristics that most do not see as “diseases” and many do not see as innate
    • e.g., intelligence, alcoholism, violence
some implications for society25
Some Implications for Society
  • Showing that we are all mutants
  • Genetic stratification, e.g., in employment or marriage
  • Confidentiality/privacy
  • Patenting and licensing
  • Right not to know and not to act
some implications for society26
Some Implications for Society
  • What is the appropriate informed consent process for genetic testing?
    • risk vs. benefit
      • Whose risk and whose benefit?
burlington northern santa fe
Burlington Northern Santa Fe
  • Demanded that employees applying for workers’ comp for carpal tunnel syndrome undergo genetic testing to determine whether they had mutation in the gene causing hereditary neuropathy with liability to pressure palsies (HNPP)
burlington northern santa fe29
Burlington Northern Santa Fe
  • The science includes:
    • those with mutations have higher risk for carpal tunnel syndrome
    • however, the magnitude of their risk not yet known
    • and such mutations are relatively rare, but carpel tunnel syndrome is common
burlington northern santa fe30
Burlington Northern Santa Fe
  • The social issues include:
    • where do responsibilities of employer and of individual re. causation lie – especially if it is an innate quality of the employee that puts him or her at increased risk?
burlington northern santa fe31
Burlington Northern Santa Fe
  • The social issues include:
    • does an employer have the right to demand that employees learn medical information they may not want to know – and that may have implications for other family members as well
burlington northern santa fe32
Burlington Northern Santa Fe
  • The social issues include:
    • will genetic information gathered by employer influence hiring, retention or promotion
    • will such information be shared with health, life or disability insurers or others
burlington northern santa fe33
Burlington Northern Santa Fe
  • The social issues include:
    • what if the genetic information has a social stigma – who in the workplace will know it?
    • what if the genetic variation of interest is more common in certain “ethnic” groups?
burlington northern santa fe34
Burlington Northern Santa Fe
  • Bad science?
  • Bad social policy?
burlington northern santa fe35
Burlington Northern Santa Fe
  • The resolution – BNSF:
    • ceased the testing
    • promised not to use other genetic testing without union’s OK
    • volunteered to help pass legislation to limit employer’s use of genetic testing
executive summary
Executive Summary
  • Why are the Human Genome Project and the resultant genomic medicine important for healthcare, for industrial hygiene and for society in the new millennium?
executive summary38
Executive Summary

“It is now conceivable that our children's children will know the term cancer only as a constellation of stars.”

  • President Clinton at the White House, June 26, 2000 announcing the completion of the human genome draft sequence