20 - Ethical Dimension of Medical Genetics Flashcards
Who owns genetic material and who should have access to it?
Do employers have a right to it?
What responsibility is there to offer testing to an individual when the result may INDIRECTLY reveal the genetic status of a relative?
Especially important if they don’t want to know
Autonomy of both sides to know and not to know
Should parents be permitted to chose sex?
Pre-Implantation Genetic Diagnosis
Testing one family member but not the other?
- twins so have the same genetics BUT same mutation doesn’t mean same progression or severity
- does Lilys right to know > right not to know?
- tension within the family dynamic
- does she have an obligation to be tested as she is starting a family?
> obligation to prevent giving birth to children with disease?
> right of children to be born free of disease? - is there a duty to the unborn child?
- there is a sense of responsibility in our society as we have the knowledge and ability TO know if our children have disease so there is a social pressure to have kids free of disease
- future autonomy of the fetus
What is the special nature of genetic information
- genetic information is personal but it may also affect other people (family)
- it may be predictive of adverse future events
- decisions made with this genetic info doesn’t just affect self it also affects future generations
- 3rd parties are becoming more interested in genetic information
Examples of 3rd parties becoming more interested in genetic information?
Police
Immigration - this info implicates others. If you know some genetic information then you HAVE to legally disclose it
Stratified medical/life insurance policies
Employers
What can be done with the genetic information
Often nothing can be done to halt the progression of genetic disorders and so this info may only be helpful in making decisions about reproduction and whether or not you choose to take a risk and pass this on the future generations
What may be an incidental finding during genetic testing?
Parental findings (3-10% are not true fathers) If they find this information then do the children have a right to know? What about the mother's and father's rights? Can be devastating information for the entire family
What are some ethical issues surround the use of genetic information?
- not everyone has equitable access to genetic services (justice)
- voluntary vs mandatory counselling (choice vs coercion)
- confidentiality vs the duty to inform relatives of their own genetic risk
- the testing of at risk individuals (harm vs benefit)
- FULL disclosure vs selective disclosure of genetic information
- privacy and confidentiality from 3rd parties
- medical use based on the genetic info i.e. prenatal diagnosis > sex selection (PGD)
- discrimination and stigma based on knowledge of an individuals genetic status (possible future adverse events)
What are some confidentiality and privacy issues?
- individuals who have undergone genetic testing have a right to privacy and so we should not disclose that information without their consent
When may there be tension between a family when discussing genetic information
If an individuals pursuit of genetic testing reveals indirectly potentially adverse information about someone elses risk
legal and moral rights to know and not to know
Does a GP or genetic counsellor have an ethical or professional obligation to inform her relatives about their increased risk?
- the family is not her patient (so professionally no. Hard in rural because BOTH might be her patient)
- suggest that given her already known knowledge about her mother and her cancer maybe she should get genetic testing > this way she is not disclosing another patients results/no breach in confidentiality
- she hasn’t got consent to disclose the genetic info
- GP has no obligation to pass on the info to INSURANCE companies about Susans sister who doesn’t know as hasn’t been tested
Issues with testing at risk CHILDREN
- there is general international agreement that kids CANNOT be tested for a ADULT onset disorder, for which nothing can be done to halt the disorder
Why do we not test children for adult onset genetic disorders
- respect for their future autonomy
- they can’t be well informed and make decisions that impact on their future until 16
- non-maleficence
> preventing harm (stress/stigma/discrimination) - negative results is reassuring
- but POSITIVE results can result in harm
> parents may feel it isn’t worth supporting the child in education as won’t live long so why invest in them. Stigmatised and may be survival guilt - there are many social implications
Biobanks…
- biobanks are a collection of biological material
- do these places need consent from individuals? What are the limits of the necessity of consent?
- confidentiality issues and privacy issues
- there may be secondary uses of the samples over time (function creep) - is consent needed for these secondary uses?
- do results need to be returned
- data sharing - who OWNS the genetic material, who has a right to access to it?
