Transcript 10-31

Paper Topics (Paper #1)
 PAS/VAE 8
 Abortion 3
 Female genital
“mutilation” 2
 Drugs for behavioral
disorders in children
 Managed care &
patient advocacy
 Cloning- organ farms
 Parental responsibility
 Determining death
 Animal
experimentation
 Conjoined twins
 Religious refusal
 Terminal sedation
 Care of neonates
 Genetics
 Stem cell research
 Advance directives
Genetic Screening
Human Genome Project
Goal: Map the entire human genome
Limits
Map = static
Genome = dynamic; constantly interacting
with other parts of itself and with the
chemical environment
How many humans have to be sampled to
arrive at the human genome?
Genetic Determinism
Idea that genes mostly or completely
determine who we are and how we
behave
Best scientific evidence: complex
continuous interaction between genes and
environment
Less an explicit position than a trap one
falls into when not thinking carefully
Problem with Genome
Early ability to screen for genetic defects
or risk factors
Much later ability to intervene to fix
those factors (if ever)
How good is a screening test with which
no treatment is associated?
A Brief Catalog of Ethical
Concerns
Privacy
Conceal genetic info from:
Employers?
Insurance companies?
Other members of family?
Would knowing prenatal risk lead to
inevitable social coercion to prevent birth
of “expensive” babies? (or demand that
individual pay for care?)
Safety
Genetic technology may be experimental
and relatively untested
When is it acceptable to attempt first
human application?
Ethical to experiment on future child
without its consent?
Justice
Genetic screening and technologies likely
to be very costly
Either would add greatly to costs of
health care in US…
Or would worsen two-tier system leaving
“lower class” without access
Example: Drug to raise IQ by 20 points
Eco-Ethics
Ecological risks of “messing around” with
genetic material and genetic diversity
Probably mostly applies to agricultural
uses which are currently little regulated
How rational is European distrust of
genetically engineered food products?
Is genetic engineering really different from
selective breeding?
Somatic vs. Germ Cells
Somatic manipulation: affects only one
individual
Germ line manipulation: in theory affects
a complete family tree indefinitely into
future
Germ line therapy seems more intrusive
and invasive re: the human gene pool
(but is a “better fix”)
Commercialization
Patenting of genes and
gene products
Granting exclusive licenses
for genetic tests and
methods
Patenting Genes?
Sounds ridiculous
Probably not a great threat
Patenting gives one exclusionary rights (not
any positive rights)
Patenting assures public access to
information
Cannot patent your gene or your genome
Exclusive Licenses
May be a bigger threat
Replaces scientific exchange with
industrial secrecy
Conflict of interest for scientists and
universities
Makes it difficult for practitioner to trust
information from journals, etc. (informed
consent)
Licenses: Example
Brca1 gene: 86% risk of breast cancer if a
relative has disease
Based on this test, some women had
preventive mastectomies
Now thought to be only 40% predictive
Did new information get out fast enough,
given company’s financial interest?
Eugenics
Negative eugenics: Prevent
or treat genetic diseases
Positive eugenics: Improve
or enhance function of future
generations
Eugenics (cont.)
Usually argue negative eugenics is
defensible, positive is not (due to who
gets to define “enhancement”)
Recent criticisms: There may be no hard
and fast line between remedying a defect
and “enhancement”
Treatment vs.
Enhancement
Therapy
Enhancement
0
Child’s Right to an Open
Future
In favor:
Protects child’s exercise of developing
autonomy
Prevents parents from exploiting their
children in the name of their own
interests or those of the group
Child’s Right to an Open
Future
Opposed:
Idealizes a picture of a child as a future
chooser
At some time of full maturity, looks around
among communities and makes a free choice
as to where to live
Is this a coherent, meaningful picture
of a child?
Child’s Right to an Open
Future-- Opposed
All “parenting” is an exercise in limiting a
child’s future
Doing one thing always means you did not
do something else (opportunity costs)
Doing something else would have provided
child with some additional future choice
Cannot teach values, beliefs, moral rules
without limiting child’s future in some way
Child’s Right to an Open
Future-- Opposed
Being a child means not getting to
choose
Who your parents are
What is your community of origin
Your family’s religious or philosophical
allegiances
Future choices cannot undo your
“roots”
Against Exploiting Children
All good parenting means closing off
some futures
One way parents can exploit their children
is to close off futures
No easy formula to distinguish good and
bad parenting
Hence cases like Old Order Amish &
schools are tough cases
Genetics in its place
Nazi Germany proved that if you want to
do evil in the name of positive eugenics,
you don’t need newest genetic
technologies
McGee: If you want to really mess up
your kids you don’t need gene therapy to
do it
Genetics not a special ethical category
Disabilities perspectives
J. Andre: Much of ethical thinking and
moral development is “learning to see”
Typically we are blind to the many ways
our society disadvantages and
discriminates against persons with
disabilities
Ethical thinking, at least, should not
promote more blindness