Understanding of genetics in older adults

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Understanding of genetics in older adults

• Heather Skirton
• PhD, MSC, RGN, SCM,
• Reg Genetic Counsellor

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Why do this study?

• increased use of genetic technology for
  diagnostic testing
• increased understanding of genetic predisposition
  to common diseases
• use of pharmacogenomics in prescription of drugs

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Relevance to older adults

• older adults more likely to be affected by common
  conditions, therefore more likely to be offered
  testing
• may be asked to have genetic test to inform
  genetic counselling for younger family members
• may be asked to participate in genetic research

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Objectives

• to identify the level of understanding of genetic
  testing in a sample of older adults in the United
  Kingdom
• to explore attitudes of the older adults towards
  genetic testing

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Methods

• two focus groups, participants gt65 years
• group discussion audio-taped and transcribed
• data analysis by coding and extraction of themes
  (Miles Huberman, 1994)

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Focus Groups

• Group A - individuals associated with
• day centre for the elderly held in
• church building (some attendees,
• some helpers)
• Group B - residents of warden assisted housing
  estate for the elderly

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Demographics

• 17 participants (12 women)
• mean age 76 (majority gt75)
• all white European
• 8 married (8 widowed, 1 never married)
• all but unmarried person had children
• all were retired from paid work

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Schedule of topics

• knowledge of genetic testing
• attitudes to testing for self
• attitudes to testing for research
• disclosing results.

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Main themes

• Understanding- personal experience, range of
  conditions, scientific knowledge
• Approach to testing- knowledge as a good thing,
  ethical concerns, conditions for testing
• Disclosure of results a legacy for the children

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Understanding - Personal experience

• Genetics was something passed down
• my brother died of a cerebral haemorrhage, my
  father died of a cerebral haemorrhage, my mother
  died of a stroke, so obviously, it runs in the
  family,

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Understanding - range of conditions

• tall stature
• gender
• race
• shyness
• cystic fibrosis
• Huntington disease
• haemophilia
• sickle cell
• spina bifida

• asthma
• cancer
• respiratory problems
• back trouble
• learning difficulty
• diabetes
• stroke
• glaucoma
• multiple sclerosis
• osteoporosis
• high cholesterol
• arthritis
• heart defect
• heart failure

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Understanding - scientific knowledge

• Most had very little knowledge but were keen to
  know more
• One remarked if you dont know what it is,
  well its in the genes
• Concerns expressed about extent of scientific
  interference and patenting

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Understanding - ethical concerns

• I was reading the other day. They are almost
  at the stage of being able to intervene with the
  gene for cystic fibrosis which is a terrible
  disease, but the next thing is you know not the
  next thing but will there be eventually you know
  we dont want to get rid of red hair or we want
  to get rid of

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Approach to genetic testing

• knowledge itself seen as a good thing
• ethical concerns were raised about use or misuse
  of testing

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Approach to genetic testing

• An improvement that may help stop disease
• Knowing what to expect
• Not now, I am too old, but will help for the
  future generations
• knowledge is good. To pass on knowledge
• It would be a great thing to have

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Misuse of genetic testing

• Most of us are old enough to remember, that was
  Hitlers ideas, wasnt it? Just to raise
  blonde-haired, blue-eyed people and anyone that
  was in any way deformed or different would be
  killed because they wanted this perfect,

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Ethics of Genetic Testing

• The slippery slope
• It is difficult to set limits
• It is very difficult to make a rational decision
  but you start doing these things scientists being
  what they are, they dont always do everything
  right.

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Genetic Testing for Research

• Just a vial of blood
• Would participate to help someone else
• and/or advance science
• Would not participate for inventing or patenting
  People are making money out of this, I think it
  is absolutely horrible.

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Conditions for testing

• clean needles!!!
• information on type of test
• information on implications of results
• as much information as possible

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Disclosure

• right to have results
• the potential harm to some people from knowing
  their genetic results was acknowledged
• would share results with family if they would
  benefit
• might find disclosure difficult would entrust
  to family member

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• I would prefer to have the actual results, you
  know, because it is not just you, is it? I mean,
  Ive got four little grandchildren and if there
  was anything in my genes and I could help them by
  saying, make sure you get this checked, it is a
  possibility that you are helping them, I mean it
  is possible to do that, even at my advanced age.

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Conclusion

• older adults are interested in genetics and keen
  to learn more
• ethical concerns about abuse of gene technology
• overall, they are altruistic in respect to
  testing in clinical and research contexts

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Genetic testing viewed as a legacy for the future
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Acknowledgements

• Colleagues at the University of Texas in
  Houston.Lorraine Frazier, Amy Calvin, Marlene
  Cohen
• The older adults who participated