Personal genomic testing Flashcards
why do genetic tests raise ethical issues?
- legacy of eugenics
- genetic tests are different from other medical tests
what are the common ethical concerns related to genetic testing?
- stigmatization
- psychological harm
- detection of unintended information
- privacy
what act protects against use of genetic information in insurance and employment?
genetic information non-discrimination act (GINA) - passed 2008
what are the limitations of GINA?
- applies only to health insurers and employers
- no requirement for health insurers to pay for preventative care or treatment indicated by genetic tests
- gray area exists as to when a person is symptomatic
what are the types of genetic tests?
- screening
- carrier
- diagnostic (presymptomatic, predisposition)
what are the issues with genetic testing?
- misinterpretation of results (‘at risk’ vs. ‘affected’)
- confirmation of diagnosis may create a “pre-existing condition”
- privacy
- mandatory screening
- test development is market-driven
what is the purpose of genome wide associations?
compare large groups of individuals (unaffected controls vs individuals with symptoms of a specific disease) in an attempt to distinguish between non-harmful changes in the DNA code and pathogenic, disease-causing / predisposing changes
what is the problem with genome wide associations?
big difference between association and causation
what are the concerns with direct to consumer genetic testing?
- burden to healthcare system
- misinterpretation of risks
- psychological burden
- discrimination
- studies suggest that family history is a better predictor
how do you prevent ethical dilemmas in clinical practice?
- detailed genetic counseling
- informed consent
- keep current on published policies
what are the goals of genetic counseling?
- comprehend diagnosis
- understand inheritance
- understand alternatives for dealing with risk
- choose a course of action consistent with their view of risk, family goals, values
- make the best possible adjustment to the disorder
definition: genetic counseling
process of helping people understand and adapt to genetic disease
how do you solve ethical dilemmas in genetic testing using the principles of medical ethics?
- autonomy: respect for people’s ability to think for themselves and to independently make decisions
- veracity: being honest
- justice / equity: overall good for everyone, benefit and burden is evenly distributed
- beneficence: risk vs benefit
- nonmaleficence: risk vs benefit
- confidentiality
- fidelity
- privacy
what is the framework for analyzing ethical dilemmas in genetic testing?
- assess situation
- identify ethical problems and considerations
- decide on course of action based on ethical principles and other moral rules and practices
- evaluate situations
