Lecture 16- Ethics and genetic testing Flashcards
What is included in this lecture?
- Describe ethical frameworks that can be used to consider the issues arising in genetic testing
- Explain and critically reflect upon some of the ethical issues relating to genetic testing in the following contexts:
a) Prenatally
b) In children who cannot consent
c) Inadults - Reiterate some of the issues arising from new technologies in genetic testing
What is ethics?
- Ethics is a way of studying morality in a systematic and coherent manner
- Determining right and wrong, good and bad
- What standards should we set for these? (moral theory tells us)
› Determine the right thing to do in a given situation, and why
- Reach an ethical judgement
- what makes something good or bad or wrong
- conceptual analysis, pick apart concepts and analyse
- come to a decision, pick and defend it,
What is principlism?
› ‘Prima facie’ guides for right action, held by all morally serious people
- Autonomy: ‘self-rule’; the right to make decisions about our own lives, based on our values - Informed consent
- Confidentiality/privacy
- Beneficence: produce benefit, increase well-being
- Non-maleficence: Do not intentionally cause harm and prevent it where possible
- Justice: Treat people fairly and without discrimination
- fair distribution of benefits of health care, and burdens of ill-health
- principialism: common in medicine, 4 key principles
- Autonomy: right to give consent before a procedure is done, this is a contested concept, what to do when the autonomy of one interferes with another’s (the brother example)
- Beneficence: do the best for the patient, what is harm? interferes with autonomy
- Non-maleficience
What is utilitarianism?
› Right action: produces the greatest happiness/pleasure & minimises pain
› Maximising theory: act to bring about the greatest happiness for the greatest number
- Not focused on individuals
-utilitarianism: what matters are the consequences of an action
- focus is on happiness or pleasure
- collective approach, end point that is best
- looks at individuals in a wider group they belong to not just them alone 
What are the limitations of frameworks?
› Principles can clash:
- In frameworks with more than one value (principlism), principles may clash with each other - This forces a choice choices between them
- In practice, autonomy often ‘trumps’
› Clashes cannot happen in utiliatarianism, because there is only one value (e.g. happiness)
› The theories don’t agree on whether you can prioritise individuals
› In principlism, the patient or client is regarded as ethically primary – benefits and harms to the patient carry more ethical weight than benefits or harms to others, although others have some ethical weight
› In utilitarianism, the happiness of all individuals is equally important
- the principals can give us something to work with but then they might crash and have to choose one over the other, autonomy trumps the others
- sometimes also looking at individuals within the population
- utilitarianism= maximising happiness and collective approach
How to use an ethical framework in analysis?
› Identify possible options – ie possible courses of action, or possible policies.
› Use the values in the framework as a set of criteria to evaluate possible options (courses of action, policies etc) - That is, Look for the ethical pros and ethical cons of each option.
› Deciding which is the ethically best option may not be clear cut – there will be trade-offs, and you will have weigh up competing considerations
› It could be that there is not one option that is ethically best, may be two or three that are equally ethically appropriate.
-more objective reasons for why something is right and wrong
How to deal with should questions?
› These are not just questions about what would be best for some person or group, or what your personal feelings are.
› They are ethical questions about what it is right or wrong to do, and why
› Ethical frameworks can help us work towards a position on ethical issues arising in genetic testing
What are the ethics of reproductive choice?
› Individuals generally have the right to make their own choices having children
- when, with whom, under what circumstances
- ? what sort of children
› Where does this come from?
- Recognition of importance of individual autonomy and rights (eg principlism, UN Convention on Human Rights)
- what tests should be done, what tests should be offered
- what type of children: any type or should there be some limit
- in most of these autonomy is the guiding principle in this area
What are the ethical issues in prenatal genetic testing?
Three issues of on-going relevance:
- Moral status of the fetus
- Assumptions about the value of life for those with the condition being tested/screened for - Eugenic actions of the past
- Scope of reproductive choice: what and whom?
› Also note the ‘time sensitive’ nature of the decision to be made
- tensions in this area: so testing offered to all women and then specific ones for those with family history moral status of the foetus: is the foetus a person or not? the term person is significant, if you are a person you have a right to life, you have a right to not be killed
- some claim it is some that it isn’t
- disability rights critique: disability is social constructed and we should be supporting it not eradicating it via prenatal testing (one of the arguments) disability rights critique is this idea that disability is social construct and were are doing eugenics by screening out the fetuses with disabilities (as we define them)
What is the shadow of the past: Eugenics?
› “The study of, or belief in, the possibility of improving the qualities of the human species or a human population”
- “eu” =good; “genos” = family, race, breeding
- Term first formulated by Sir Francis Galton in 1883
› Two forms:
- Negative eugenics: discouraging reproduction by those deemed biologically unfit
- Positive eugenics: encouraging reproduction by those with ‘desirable’ traits
- improving the gene pool
- discouraging people who are deemed biologically unfit to not have children (negative eugenics)
- positive eugenics: encouraging the right people to have children
What was wrong with eugenics?
› Eugenics aimed to produce a better society in the future
› But common ethical objections are that it actually involved:
- Coercion: no choice, violence, murder
- Discrimination: – some people seen as “inferior” or “superior”
- Poor science: incorrect idea that certain types of behaviour or other characteristics are inherited
- Desire to improve the human race?
- often who is superior/inferior is is based on poor science
What is the scope of reproductive choice?
› Is it ever justified for society to limit the choices that individuals make about reproduction?
› Mechanisms for limiting or influencing choice include:
- Law/regulation
- Funding – free/subsidised/user pays full costs
- Institutional policies and practices eg termination review committees
- Health professions – codes and practices, individual discretion and conscientious objection
- is it ever justified for society to limit the reproductive choices eg. the genes for poor enamel, can screen those, might affect the decision of some people
Should there be limits to reproductive choice?
-procreative beneficence view= should use genomics to make the best possible choice for pregnancy the other view: social constraint: there should be limits on what we can do
What is the case study with CF?
- predictive genetic testing in children:
- carrier testing for CF (cystic fibrosis)
- woman had 2 children, the second child is a carrier for CF
- she wants test for the 2nd child (4 year old, doens’t have CF, but testing for if she is a carrier
- why would you offer the test: benefits: if the kid knows later on can factor it in to reproductive decisions, but against it is that you might wait, there is nothing that Molly can do atm
› Would Molly be doing the right thing (as a parent) by getting her daughter tested?
› Should parents be able to have genetic tests done on their children, when there is no medical benefit for the child (ie no treatment, no preventative measures or lifestyle changes)?
What are the issues with predictive genetic testing in children?
› Acceptability of testing turns on:
- ageofonset;and
- opportunityforusefulintervention.
› Relevant considerations:
- Interests of child
- Well-being of family / parents; and
- Future autonomy of the child.
› Generally: - test acceptable if onset likely in childhood;
- less so if likely adult onset or carrier status -what to consider when considering the ethical issues around testing children:
- the age of onset and the opportunity of prevention of the condition
- if we do the test on child, we remove the opportunity for the child to make a choice when older
- but consider wellbeing of the family, anxiety of parents and knowing about one child and not the other
