LAW 2516 Lecture Notes - Lecture 10: Genetic Testing, Genetic Discrimination, Genetic Disorder
23 May 2018
School
Department
Course
Professor
AREAS WHERE SPECIFIC RULES MAY BE
NEEDED
Privacy and confidentiality
1. Doctor owes patient duty of confidentiality- to
protect their health info
a. Duty IS NOT ABSOLUTE
b. But uncertainty as to when disclosure is
permissible
2. When can confidentiality be breached to
protect safety of 3rd parties?
a. Patient may not want to disclose existence of
gene for a disease to relatives, doctor knows
other relatives could have it putting their
health at risk
3. Commonwealth legislative scheme
a. S 4 Privacy Act (Cth) use or disclosure –
genetic info. Lists permitted health situations
b. S 95AA Privacy Act (Cth) guidelines for
disclosure– weigh up benefits and risks
• Benefits of not disclosing
• avoids breach of confidentiality,
• potential disruption to patient/ doc
relationship,
• anxiety to relatives,
• reduces harm to family relationships
• Risks of not disclosing:
• relatives left unaware of risk,
• preventable harm not averted,
• relationships damaged when relatives
discover info that was not passed to
them,
• relatives may be distressed and
experience harm
4. state legislative scheme
a. Health Care Act 2008 s 93(3)(e) disclosing
info permissible if disclosure is reasonably
required to lesson or prevent a serious threat to
the life, health or safety of a person, or a
serious threat to public safety
5. NHC guidelines
a. Guideline 1: Use or disclosure may proceed
when practitioner has a reasonable belief that
it is necessary to proceed to lessen/ prevent
serious threat to life/ safety of relative
• What is a serious threat?
• What does it mean to lessen a threat? Do
there have to be treatment options
available? if no treatments available, does
disclosure to prevent the gene being
passed to offspring ‘lessen’ the threat?
b. Guideline 3: Steps must be taken to obtain
consent of patient to disclose info
• Should consent be obtained before or after
test?
c. Guideline 8: disclosure without consent
limited to persons who are no more than 3rd
degree relatives
6. Should physicians be obligated to disclose? Liss
v Waters 2012 QCAA (Canada)
a. Facts: whether physycial who diagnosed child
with serious genetic disorder has an obligation
to inform the childs family members, within
whom the physician has no relationship of the
diagnosis
• 2nd cousin of the child ended up giving
birth to a child with the disorder, sued the
doctor for wrongful birth
b. Trial
• Test = were the circumstances of the
disease and risk sufficiently serious that a
reasonable person would think they ought
to be communicated to persons other than
the patient?
• In deciding who should be informed, the
gravity of the illness and intensity of the
relationship between doctors and third
parties should be considered- radius of
contact
• Srs condition- radius larger
• Found duty of confidentiality did not
relieve doc of other duty to warn- in fact
duty to warn outweighed duty of
confidentiality
c. On appeal:
• Must consider what a reasonable person
would do and what standard practice was
at the time
• Rejected ‘radius of contact’ standard of
too onerous
• Duty of confidentiality to child did not
allow doc to disclose info to non-patient
family members
• Although there are exceptions to duty of
confidentiality and a duty to warn 3rd
arises in some circumstances, this was not
one of them
• Threshold = imminent danger. Urgent
disclosure
• Duty to inform patient incl duty to explain
implications for extended family members
• Would then be up to the parent to
decide who to disclose info to
Discrimination
Concern= predictive genetic info may be used to
unfairly discriminate against people based on their
genetic makeup over which they have no control
2 contexts
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