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Themes:
Ethics
and Community - Ideas
BioEthics
and Disability:
A
need for a disability lens on bioethical issues
Bioethics issues touch every person's life.
Some more, some less. Feminist
approaches to bioethics developed because it was believed that
bioethics issues often touch women in special ways and that there is
a women's angle to bioethics issues.
The same holds true for people with disabilities.
Nearly every issue encompassed by the field of bioethics such
as: end of life decision-making; the allocation of healthcare
resources; the use of genetic and non genetic technology for
(therapy, testing, enhancement); research on non-competent people;
questions of futile care; selective non-treatment of newborns;
debates about personhood; mercy killing and disability; and adjusted
life years, to name a few also affect people with disabilities
people in a very special way.
If we look at the debate of bioethical issues it becomes evident
that they
are for the most part debated without the presence of individuals
with disabilities and with a certain perception of disability and
people with disabilities in mind.
Not only that, concepts such as Autonomy, Justice, Self
determination, Beneficence (Do good), Non Malfeasance (Do No Harm)
are used frequently in the debate of bioethical issues.
Incidentally the same vocabulary is used in the debate around
‘disability rights’. Nearer
scrutiny reveals that these concepts are often filled with different
meanings in these two debates.
The
disability rights movement is largely ignored in the debate of
bioethical issues. The
characteristic "disability" is used by these
various parties in the bioethics debate to justify and promote their
own
agendas (e.g. bio/gene-technology )among other things-
promises to fix perceived disabilities, impairments, diseases and
defects and helps to diminish suffering.
But who decides what is a disability, disease, an
impairment and a 'defect' in need of fixing?
Who decides what the mode of fixing (medical or societal)
should be, and who decides what is suffering?
These questions are answered mostly by non disabled people.
In general the absence of disabled people in the debate
around bioethical issues has led as a consequence, to a whole set of
standards, morals, justifications and actions that people believe
are only applicable to the characteristic "disability".
To
give you four examples:
1.
Predictive pre-birth testing
The claim
for the development and usage of predictive pre-birth genetic and
non-genetic testing is that this testing will help to prevent
defects, diseases and suffering.
But who decides what is a disease (not too long ago
homosexuality was viewed as a disease), which gene is the
"defect" in need of fixing or prevention, and who decides
what is suffering? Studies
show that people with disabilities (social model) often rate their
own quality of life as equal to or higher than their non-disabled
counterparts. Yet on
closer examination it becomes clear that we see the class of the
‘disabled’ as a target for predictive pre-birth testing for the
prevention of suffering.
In the UK,
for example, late term abortions are only allowed in the event
that the fetus has a disability (medical model). And more and more
countries outlaw sex selection but do not outlaw ‘ability’
selection.
The prohibition of sex selection is justified with the argument that
sex
selection lowers the status of women in general and only perpetuates
the situation that gave rise to it.
This and most of the arguments used to
justify the prohibition of sex selection could be applied just as
well to
the prohibition of ‘ability’ selection - something that is
rarely debated.
Only recently did individuals with disability start to question the
distinction between sex selection and ‘ability’ selection.
2. Anti-genetic discrimination
laws:
Today, many countries are developing anti-genetic discrimination
laws
aimed at preventing discrimination of individuals based on their
genetic
pre-disposition to certain conditions.
(The legislation is meant to
protect people from discrimination in such areas as the workplace or
in
the context of obtaining insurance coverage.)
Now there are a variety of
ways these laws might be shaped.
For example, these laws could
prohibit discrimination against people who have the gene for a
disease
like Huntington Chorea, whether or not they exhibit the clinical
symptoms.
Or
the laws could prohibit discrimination against
people who have the gene for the condition until such time that the
clinical symptoms appear.
In
this case, it would only be legal to discriminate
against
someone with the gene for Huntington Chorea once they exhibit the
clinical symptoms for Huntington Chorea.
In other words, as long as one is not viewed as disabled
(symptomatic) you are protected from discrimination.
As soon as you are viewed within the framework of having a
disability, the discrimination is not prohibited anymore. The point
here is that the laws, as they are shaped at the moment, serve to
further entrench a double standard of protection from
discrimination: discrimination against disabled, symptomatic people
is acceptable, but discrimination against non-disabled, asymptomatic
people is not acceptable.
These differences in the view of acceptable discrimination based on
abilities (clinical symptoms) versus other characteristics is
readily
acknowledged and, it seems, endorsed by the American Society of
Human Genetics 1995 which states: "Differentiation of
applicants on the basis of health risks is legal and should be
distinguished from discrimination, which is illegal if based on
race, gender, or sexual orientation.
Health insurance and disability insurance policies commonly
exclude coverage for 'pre-existing conditions'".
Moreover, this distinction seems to be also endorsed by the American
Civil Liberties Union (ACLU) which says in their campaign for an
anti-genetic discrimination law, in 2000, "that Congress should
take immediate steps to protect genetic privacy [because] it is
inherently unfair to discriminate against someone based on immutable
characteristics that do not limit their abilities..." With
human rights groups and academia agreeing that there is an
ethical/moral/political difference between discriminations against
symptomatic and asymptomatic people, these new laws further
marginalize the symptomatic disabled people from the human/equality
rights movement. They further entrench discriminatory actions which
are solely justified by values based on a medical view of disability
and societal view of other characteristics.
3. Wrongful life suits
In wrongful life lawsuits, it is charged that having the child in
question
was a legally bad act because having to live a life with the
disability in
question is worse than not existing at all.
It is important to note that
the courts will not entertain a wrongful life case on the basis of
illegitimacy, poverty, or race.
However, wrongful life cases based on
disability (medical model) are seen as justified. To justify
this
distinction it is argued that, "recognition of wrongful life
would be
consistent with interests to future children.
It accepts that where
medical knowledge and technology permits, a child should not be born
to suffer extreme pain and suffering that could be avoided but for
someone's negligence. It
also assumes extreme pain and suffering are synonymous with
disability. Obviously they are not.
Thus, some American judges have talked about a fundamental
right of a child to be born as a ‘whole functional human being.’
Yet again, disability is understood from the perspective of
the medical model, a move
that is crucial to making this distinction.
4. Assisted Suicide, Euthanasia and
Mercy Killing
From the debate in Canada and elsewhere it is obvious that when
society
looks
at end of life decisions or euthanasia (voluntary or non-voluntary)
a line is drawn based on whether disability is involved or not.
If a parent kills their non-disabled child a much greater
punishment occurs by the court than if the parent kills their child
with a disability. Assisted
suicide and the right to a dignified death focuses on the
disabled/ill person not wanting to give this same right to others
such as indigenous people, prisoners and the public at large.
From the examples above it seems to be clear that the debate of
bioethics issues affects people with disability to their core.
From the above examples it becomes obvious that a disability lens on
bioethical issues is needed. In addition, it is evident that a
certain perception of disability, (medical model, suffering entity
model), creates a double morality/ethics standard regarding
bioethical issues. People with disabilities are on one side and the rest are on
the other side thereby ignoring the societal/human rights model.
If a societal model of disability would be used within the
debate of bioethics issues, which would see able-ism on par
with racism and sexism, the debate around many bioethics issues
would be different. I
suggest, therefore, that this "disability perspective"
deserves the attention of the bioethics community and the bioethics
field deserves the attention of people with disability.
Written
by Dr. Gregor Wolbring
For further information on bioethics and disability have a look at
http://www.thalidomide.ca/gwolbring
and at the listserve of the International Network on Bioethics
and
Disability as described in the above webpage
Dr. Gregor Wolbring
webpage: http://www.thalidomide.ca/gwolbring
Founder and Coordinator of the International Network on Bioethics
and
Disability; a Network supported by the International Association of
Bioethics To subscribe to the Network go to
http://groups.yahoo.com/group/Bioethics/join
or send a blank e-mail to bioethics-subscribe@yahoogroups.com
and Biochemist at the
Dept. of Biochemistry and Molecular Biology
Faculty of Medicine
and Adjunct Assistant Professor for bioethical issues
at the Dept. of Community Rehabilitation and Disability Studies
Faculty of Education
both University of Calgary
Phone 1-403-220-5448
Fax 1-403-283-4740
eFax 1-720-920-6324
e-mail gwolbrin@ucalgary.ca
Mailing address:
Dr. Gregor Wolbring
Dept. of Medical Biochemistry
Faculty of Medicine
University of Calgary
3330 Hospital Drive NW
T2N 4N1
Calgary Alberta Canada
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