Lecture 18- Sharing of genetic information: family, confidentiality Genetic testing of children Flashcards
Q: Under the federal Privacy Act in Australia, it is not lawful for a health professional to disclose a person’s genetic information to other people unless:
A. The person consents to the disclosure.
B. The disclosure is necessary to prevent a serious threat to the life, health or safety of a genetic relative and the information is given to the relative.
C. The person is a young child and the information is given to the child’s parents
D. Any of the above conditions applies.
A- yes
B-yes
C-yes
D-all of the above are true
What are the issues surrounding sharing of genetic information: family, confidentiality and genetic testing of children?
- consent process for genetic testing
- privacy – confidentiality - health interests of other people
- justifiable breach of confidentiality and duty to warn
- genetic tests on children
Scenario Susan, 30 yo, diagnosed with FAP - a genetic disease with high risk of developing colon cancer. Most people with FAP get cancer by age 40, if not treated. Susan’s mother died of colon cancer at 32. Susan refuses to tell siblings about diagnosis. If warned, they could be tested and treated – otherwise, high risk of premature death.
– Should the counsellor tell Susan’s siblings?
– Who ‘owns’ the information about the existence of the FAP gene in the family?
FAP- familial adenol polyposis, get growths in the colon, die of it usually
-genetic -is it justifiable to breach confidentiality to tell the sibling, is there a duty for the counsellor
What are the reasons for confidentiality?
- Ethical – autonomy
- Medical
–Encourage people to seek treatment
–Avoid spread of disease
–Openness > better outcome
–But exceptions to requirement of confidentiality sometimes justified
- confidentiality is good as it encourages people to go to the doctor
- it is confidential as long as there isn’t an overriding public interest
- forensic evidence needed, need a court order to touch a person without their consent
What are the issues surrounding the fact that genetic information is familial?
- need to test relative with condition
- ‘informal discussion ’between doctors
- information from genetic registers
- contact family - testing, counselling
- family records compiled
- information sent to genetic registers
What were the facts of Rogers v Whitaker (HCA)?
- case regarding informed consent, leading case in medical negligence
- miss Whitaker, had an accident, stick flew into her eye, almost blind
- got married, children, normal life
- one son had accident, took time off and before back to work have eyes checked, referred to Rogers (opthalmic surgeon) may be able to improve the appearance and maybe improved sight
- when you operate on the bad eye, is there a chance that good eye is affected? he didn’t say, she became blind in the other eye, she sued him, saying that he should have told her 1 in 14000, was he negligent?
- she won twice, so she did
- what is the principal of the law here= the reasoning was that he should have told her since
- should tell her what an ordinary person would want to know and the patient in that situation would want to know
What are the guidelines for informed consent?
- tests generally require consent
- full information before consent
–how the test will be done –what it may show - limitations in predictions –need to inform relatives –implications for insurers, employers
• counselling about possible anxiety, depression, strain on family relationships, stigma, ‘survivor guilt’.
What are the laws covering privacy and confidentiality for patients?
- Legislation & common law: health information (including genetic information) should not be collected or used (revealed to others) without person’s consent.
• Exception: disclosure necessary to prevent serious and imminent threat to an individual’s life, health or safety (now includes serious risk to genetic relatives even if risk not imminent).
What is the definition of a genetic relative?
• s. 6 genetic relative of an individual (the first individual) means another individual who is related to the first individual by blood, including but not limited to a sibling, a parent or a descendant of the first individual.
-Note: does not apply to states and no equivalent provision in Victorian law
What are the competing public interests in relation to genetic information?
- People want to keep health information private - especially not revealed to employers, insurance companies, govt bodies etc
- But genetic information is familial - person’s genetic test results might be important for blood relatives
-Right to privacy versus right to be warned
When is it legal to breach confidentiality and is there a duty to do so in some cases?
- In Australia: there is legal and ethical, justification for warning genetic relatives (doctor has a defence if sued for breach of confidentiality)
- But no legal duty to warn relatives. (relatives can’t sue if not warned).
- there is no duty to warn relatives under Australian law, so cannot sue the counsellor
- if counsellor warns the relatives, the patient can sue for breach of confidentiality,
What are the rules with genetic tests on children?
- Parents of children under 18 can consent
- Older children can consent if mature enough to understand what is involved.
- However, where parents consent, some people are concerned about some genetic tests on children
- some tests important for health, but sometimes maybe parents test when it is not in the best interests of the child
- acquiring information that the child might not ever want to know, also sometimes testing for benefit of other children
What are the concerns in relation to performing genetic tests on children?
- test to benefit child or family?
- obtaining genetic information about a child fails to respect the child’s later autonomy and right to decide later if s/he wants to know.
- should test only if intervention available (surveillance, pre-emptive or definitive medical treatment)
- family is an entity that should be considered too
- the child should be tested when there is something that you can do
What are some of the other views regarding genetic testing on children?
-‘All parental choices (school, place of living, etc) close off some future option… some of these choices may even turn out to be harmful and the future adult may regret them. Autonomy is only restricted when parents impede rational agency or severely constrict future options’.
Should parents decide about the genetics tests on their child?
- Parents are best placed to know what their child’s talents, abilities, character, history are like, and the circumstances of their own family.
- Parents experience the impact of decisions about their child more than anyone else besides the child.
