Transcript Ethical issues in prenatal genetic testing

OGOPEER Rounds
October 2nd 2007
Ethical Issues in Prenatal
Genetic Testing
Jeff Nisker MD PhD FRCSC
Professor of Obstetrics & Gynecology and Oncology
Coordinator Health Ethics and Humanities
Schulich School of Medicine & Dentistry
University of Western Ontario
Interconnected Ethical Issues
1. Justice
2. Clinician obligations (including informed choice)
3. For what genetic attributes is PND appropriate
4. Under what circumstances is PGD appropriate
5. Public education and physician education
6. Public inclusion in policymaking
7. Genetic knowledge exists in political, economic,
and cultural contexts
8. Resource allocation
9. Research issues
10. Privacy and insurance discrimination
1. Distributive justice
(my transparency declaration)
• Equal opportunity for all members of a society
Rawls 1971, Bourgeois 1995
- to access PND
- to comprehensive counselling
- to social support (e.g. education, daycare, assisted living)
• Vulnerable should benefit
Rawls 1971, Bourgeois 1995
• Volunteers:“veil of ignorance” (Rawls), “amnestic drug” (Bourgeois)
2. Clinician obligations
a) To patient including informed choice
b)To other patients and others in community
c)To community of persons living with disabilities
d) Advocacy (RCPSC CanMeds)
e) To colleagues, self, and family
2a. Clinician obligation to patient
(i) Informed choice
(ii) Obligation to best clinical practice, including
understanding and supporting emotional aspects of care
Nisker, Cox et al, 2006; Lawson, Pierson 2007
(iii) Obligation to delivery and handling of information
2a. Informed choice
• Understand / Appreciate / Voluntary (TCPS 1998)
• Counselling: before IPS, before amnio/CVS, as part of
consideration of genetic abortion
• Legal obligation - “Duty to warn of inherited diseases and to
offer opportunities for testing”
National Judicial Institute 2005
“…I’m more concerned that people don’t know… Man, Orch WS
Nisker, Cox, Kazubowski-Houston 2006
“…How come doctors don’t make their patients aware…”
Woman, SD WS
Nisker, Martin et al 2006
• requirements for informed consent to undergo genetic
testing exceed requirements for informed consent to
undergo other types of medical testing because of
“complex relationships”. Wertz, Fletcher 1991
Burgess, Laberge, Knoppers 1998
- known gene carrier and other family members
- persons living with disabilities and others
Parens, Asch 2000
- “geneticization” Lippman 1989
- feminist critique Sherwin 1992, 1998
“Most women make these decisions in conjunction with…
spouses, parents, siblings, friends, and, very importantly,
medical care providers – all approach PT with their own
attitudes, values, and desires.”
“…interconnected roles of personal, familial, medical, and
societal influences…”
“True reproductive autonomy necessarily involves striving for
a social context in which parents who choose not to undergo
testing, or who choose to raise a child with a disability, would
be supported… enhances the ability of individuals to have
healthy families, while also respecting and upholding the
diversity of society.”
“…medical counselling protocols for PT may be biased in a way
that increases testing compliance rather than providing
balanced information that fosters informed and autonomous
decision making.”
Rothman 1986; Brunger, Lippman 1995; Marteau et al 1993
“Recent Canadian studies indicate that physician characteristics
values, and attitudes are related to the uptake of MSS.”
Carroll, Reid, Woodward, Permaul-Woods, Domb, Ryan, et al. 1997; Chandra, Crane,
Hutchens, Bennet, O’Grady, Duff, et al. 2003
“… unexpected patterns of miscommunication regarding
information needs between physicians and pregnant women
contemplating PT. Wohlgemuth, Lawson. 2000
2c. Clinician obligation to community
of persons living with disabilities
•Disabilities critique
- “[PND] sends a hurtful message that people are reducible to a
single perceived-to-be-undesirable trait.” Parens & Asch 2000
- “Allowing the part to stand for the whole “synecdoche” Parens &
Asch 2000 is a psychological trope employed by prospective
parents, clinicians and institutions.”
Mykitiuk, Nisker 2007
•Social support (e.g. education, childcare, assisted living)
- “I am the healthiest personI know” Catherine Frazee 2005
•Spectrum conditions
Nisker 1995, 2001; Nisker, Cox, Kazubowski-Houston 2006
- Tourette’s, autism, cystic fibrosis, Down’s syndrome
- “Ringers”
2d. Advocacy RCPSC
3. Appropriate for what attributes?
a)
b)
c)
d)
e)
f)
g)
h)
i)
lethal anomalies?
cognitive challenges?
physical challenges?
gender preference?
saviour siblings?
positive selection?
spectrum conditions?
adult-onset conditions?
enhancement?
JOGC, 1995
Pregnancy Termination Guideline
3g. Spectrum conditions
3h. Adult-onset conditions
3i. Enhancement
3i. Enhancement
4. Under what circumstances
is PGD appropriate
JOGC, 1995
5. Public education and physician education
6. Public inclusion in policymaking
• A good citizen deliberation strategy should engage a
large number of citizens of diverse perspectives
Rowe & Frewer 2000; Nisker, Martin et al 2006
• All current strategies of citizen participation limited by
either:
lack of opportunity to educate citizens prior to
soliciting opinions
or
lack of large number of citizens
Rowe & Frewer 2000; Nisker, Martin et al 2006
Citizen Deliberation On PGD
Report Prepared for Health Canada October 2006
Jeff Nisker, MD, PhD, Susan M. Cox, PhD, Magdalena Kazubowski-Houston, PhD
Performance Schedule: Fall 2005
Vancouver
Toronto
Montréal
Roundhouse Theatre
Al Green Theatre
Bombardier Theatre
September 7–10
September 13–17
October 27–29
205 attendees
400 attendees
136 attendees
Overarching Themes
1. Intense concern with implications of drawing line between
acceptable and unacceptable uses of PGD/PND (no
distinction felt between PGD and PND)
2. Who will decide where such a line is drawn
3. Reluctance to offer prescriptions about what should or
should not be allowed
4. Deep reflection about responsibilities all citizens bear in
shaping future societies by making individual choices
with collective effects, and collective choices with
individual effects
A man (unidentified perspective) stated: … individuals acting in their own
best interests don’t always make choices that are the best for the
collective experience. (V5 LAD)
A woman geneticist felt: …Regarding the, ah, question about who should
decide, I do think society should play a role in, in establishing guidelines
and deciding once a test is available. I think that choice is the right thing
for patients, but in terms of what we develop and what we support with
our research funding and with our health-care dollars, I think society
should play a choice, you know, a role, in there. . . . (V3 LAD)
Several audience members felt that decisions made by individuals should
be, for example, “backed up by a collective support” system including
counselling agencies for people with disabilities and their families
7. Genetic knowledge and political,
economic, and cultural contexts
a) “the production of genomic-genetic knowledge occurs
within political, economic and cultural contexts and in turn
reshapes those contexts” Brunger & Cox 2001
b) Synecdoche Parens & Asch 2000
c) “Geneticization” Lippman 1989
d) “Vulnerable groups have particular reason to be nervous
that new forms of knowledge will issue in new forms of
social control” Boetzskes 1999
e) “There is No Gene for the Human Spirit” Nisker 1997, 2001, 2002
8. Resource allocation
a) Increasing number of conditions for which PND possible
b) Equal access to PND or to PGD avoidance of genetic
abortion
c) Funding required for best clinical practice (technical,
counselling, etc.)
d) Funding required for social support
e) Always remember which hat you’re wearing
9. Research issues
a) patents and intellectual property
Gold 1999
b) negotiating with specific communities
Weijer, Goldsand
c) gene banking
Knoppers
d) sharing of data
e) “subject” recruitment
10. Privacy and insurance discrimination
Wertz, Fletcher 1991
Lemmens, Bahamin 1998
Nisker, Martin et al 2006
Ethical practice insists the highest
level of clinical practice
Thank you.