Transcript Slide 1

Lecture 11
Eugenics and Genetics:
Anxieties
BMS2250 Medical Ethics
Semester 1, 2006-07
P. C. Lo
(A) Recapitulation
Moral excitements over genetic science
and technology
Joseph Fletcher, Gregory Pence
“Today we are learning the
language in which God
created life….
With this profound new knowledge,
human kind is on the verge of
gaining immense new power to
heal….”
President Bill Clinton
The New York Times, June 27, 2000, D8.
(B) General Anxieties
Literature
Movies
Mary W. Shelley, Frankenstein, or
the Modern Prometheus, 1818
1932
Central London Hatchery and
Conditioning Centre
2540 A.D.
Human beings no longer produce living
offspring. Instead, surgically removed
ovaries produce ova that are fertilized in
artificial receptacles and incubated in
specially designed bottles
Reproductive conditioning
Fetuses are conditioned differently
Upper caste -- Alphas and Betas
Lower caste -- Gammas, Deltas, and
Epsilons
1940
The Sorcerer's Apprentice – we are incapable
to control Nature’s awesome power
“Rape of nature”
“Control is an illusion”
“We should have some respect
for that power”
Department of Precrime
2054 A.D.
Can we arrest and convict someone
for the future murder of a man
whom he has not even met?
Is it possible for the Pre-Cogs to
be wrong?
How far can pre-emptive strike go?
What happens if
some of us can
foresee the future?
Does foreknowledge takes
away human free
will and
responsibility?
 Foreknowledge and Free Choice?
(C) To Have “Better Children”
Three Eugenic Strategies in
the Genetic Age
1. Eliminating the bad (“screening out”)
Prenatal diagnosis
2. Selecting the good (“choosing in”)
Preimplantation genetic diagnosis (PDG)
3. Redesigning for the better (“fixing up”)
Genetic engineering
From: Beyond Therapy (2003), p.33
1. “Screening Out”
Ultrasonogram, Amniocentesis, Chorionic
villi sampling
Tay-Sachs disease, anencephaly
Downs Syndrome
Multiple congenital anomalies
ABORTION !!
Clinical Genetic Service
Department of Health, HK
Genetic Counselling Unit – offers genetic
counseling for families
Genetic Screening Unit -- operates two
screening programmes for newborns,
namely, glucose-6-phosphate
dehydrogenase (G6PD) deficiency and
congenital hypothyroidism.
2. “Fixing Up”
Genetic engineering of desired traits
“Designer babies”; genetic “upgrade”
Once the specific variants of genes are
identified, the requisite genes could be
isolated, replicated or synthesized, and
then inserted into the early embryo (or
perhaps into the egg or sperm) in ways
that would eventually contribute to the
desired phenotypic traits.
Practical difficulties
To produce the desired result and only the
desired result
To avoid abnormalities, either by activating
harmful genes or by inactivating useful
ones
Artificial chromosomes?
Ethical Worries
Do parents have the right to pre-select
traits for their descendents?
To be discussed later
3. “Choosing In” -- PGD
To detect genetic or chromosomal abnormalities
in vitro
Non-therapeutic applications
To pre-select the gender of a child
To produce a child who could serve as a
compatible bone-marrow or umbilical-cordblood donor for a desperately ill sibling
Practical difficulties, eugenics-wise
Possible harm caused by removing
blastomeres for testing?
Many of the desirable human phenotypic
traits are very likely polygenic  likelihood
of finding all the “desired” genetic variants
in a single embryo is very small
Interplay of nature and nurture
Inconvenient and expensive
Watch video
Superhuman 6 “The Baby Builders” (BBC,
2000)
Ethical Worries
People already using PGD to screen for
disease markers might seek information
also about other traits
Once screening becomes automated, its
cost comes down, or if society decides to
reimburse for PGD, the use of this
approach toward “better children” might
well become the practice of at least a
significant minority.
From: Beyond Therapy (2003), p.44.
To be prevented?
To be tested and prevented as well?
Asthma, allergies, diabetes, heart disease?
Deafness, Shortness in height, learning
disabilities?
Gender?
“Gay Gene”?
Should we allow couples to do
these?
Issues
What is normal and what is a disability
or disorder, and who decides?
Are disabilities diseases? Do disabled
people need to be prevented from birth?
(D) The Big Debate
Do parents have the right to pre-select traits
for their descendents?
Yes, they do have
the right to have a healthy child
the right to a perfect child
the right to have a child that fits the family
the right to pre-select traits for our
descendents
“From chance to choice”!!
Furthermore
Birth control (quality) – to give the best to
our children
To counteract Nature, which is indifferent,
cruel, tyrannical, oppressive, hostile,
reckless, relentless
No, they do not have that right
Human beings should not play God
Human beings should not fool (tamper
with) Mother Nature
“Perfect” in what sense?
Absence of severe disease or deformity
Absence of flaws or imperfections 
presence of desired positive traits !
Value judgement!
Perfect with the presence of a specific “flaw,”
e.g., deafness?
(“A matter of culture, not a matter of
medicine!”)
“Perfect”
(cont’d)
A specific gender?
The demand for “perfection” will increase
in the case of the one-child family
Danger of sliding down the slippery slope?
Medicine as a servant of a particular
culture and an agent of social
discrimination?
Deafness, obesity
anorexia
Medical attention?
No, it is cultural.
To have a better
mood, to run
faster, to look
better
Just cultural? No,
it is the business
of medicine.
2006
Disease-free inheritance?
“All of us carry genetic variants that
predispose to illness; perhaps a few dozen
for each of us. It is highly unlikely that all
of these can ever be screened out.”
The President’s Council on
Bioethics, Beyond Therapy:
Biotechnology and the Pursuit of
Happiness (2003), p.53.
Right to choose?
Whose rights are we talking about?
Who has the freedom to choose?
For whose sake, then, are we doing
genetic eugenics?
To satisfy parents’ own interests more than
that of the descendents?
Right vs. Obligation
Parents’ reproductive
freedom
Freedom to have a
desired or wanted
child
Freedom to control
my heredity
Parents reproductive
obligation
Obligation to screen out
only the worst genetic
defects
Obligation to respect my
child as an independent
individual, not under my
ownership
(E) Eugenics & Discrimination
Discrimination in early 20th century:
compulsory sterilization, euthanasia
The Nazi programme: some people (the
“unfit”) are better off dead than alive; their
life is not worth living
Alarms
Many disabled people feel threatened by
genetic advances and are hurt by cheerful
talk about engineering a world without
people like them. “That’s very difficult for
disabled people. To hear people discuss a
world in which you don’t exist can be very
hurtful.” (Tom Shakespeare, July 4, 2003)
Lee M. Silver
2 unequal classes of people in the
future
The Naturals vs. the GenRich, i.e.,
Gene-enriched (cf. the 2 casts in the
Brave New World)
The widening gap between “rich”
and “poor”, genetically as well as
economically
24 pairs of chromosomes; species
separation!
Silver, Remaking Eden (1997), pp.4-7, 246.
This science fiction drama is set in a future when
one's life is determined by genetic engineering
rather than education or experience. The
wealthy can choose the genetic makeup of their
descendants. People are designed to fit into
whatever role is decided before birth. But what
happens when someone desires another way of
life? Citizens in this impersonal future-world are
fashioned as perfect specimens, so those in the
natural-born minority are viewed as inferior to
the pre-planned perfect specimens (aka
"Valids") who dominate.
One of the natural-borns (aka "In-Valids"), Vincent
Freeman (Ethan Hawke), has several defects (poor
vision, emotional problems, and short 30-year life
expectancy), but he also develops a different outlook
on his pre-ordained fate. He yearns to break free
from society's constraints, and he dreams of a
journey into space as a Gattaca Corp. navigator. To
accomplish his goal, he enlists the aid of DNA broker
German (Tony Shalhoub) and makes contact with
Jerome Morrow (Jude Law), who was paralyzed in
an accident and is willing to sell his superior genetic
materials. Vincent assumes Jerome's identity and is
scheduled for a flying mission
However, a week before his flight, a Gattaca
mission director is murdered, and all
members of the program are the suspects.
Meanwhile, he develops a romantic
interest in a beautiful Valid, Irene (Uma
Thurman), prevented from going into
space because of her heart defect.
Tracked by a relentless investigator who is
methodically jigsawing all the pieces
together, Jerome finds his aspirations
dissolving into stardust.
Two kinds of people
A “made man”
A “faith birth”
A “vitro”
An “utero”
A “Valid”
An “In-valid”
A “de-gene-erate”
“Genoism” – Discrimination on the basis of “genetic
quotient”; social prejudice and stigmatization
Vincent: a product of “reproductive roulette”
Anton: a product of parental choice
“Leave a few things to Chance.” “No, you
should give the child the best possible start
in life. He will be the best of you”
Father likes Anton better, whom he deems is
worthy of his name (Antonio)
Vincent’s dream is to become an astronaut,
but he is ridiculed by his father
Widespread discrimination in society (e.g.,
employment)
The job interview is a urine test
Vincent can only clean toilets, and is a
new underclass
Discrimination down to a science!
However, a swimming contest with his
brother gives Vincent self-confidence, and
he decides to pursue his dream
Watch movie
Chapter 3
8:20 – 19:56
Coda of additional feature
If parents are to choose only a genetically
healthy child, the following people would
not have been born:
Abraham Lincoln
Marfan Syndrome
Emily Dickenson
Manic Depression
Vincent van Gogh
Epilepsy
Albert Einstein
Dyslexia
John F. Kennedy
Addison’s Disease
Rita Hayworth
Alzheimer’s Disease
Ray Charles
Primary Glaucoma
Stephen Hawking
Amyotrophic Lateral
Sclerosis
Asthma
Jackie Joyner-Kersee
The other birth that may never
have taken place
Is your own!
Lessons of “Gattaca”
Proper Perspectives in the Genetic Age
Genetic determinism is wrong
The triumph of the human spirit in those who
are genetically “inferior”
What is lacking in Nature is more than made
up for by sufficient Nurture
“There is no gene for the human spirit”
Physical health is certainly not a sufficient
condition for a good life; it might not even
be a necessary condition for a good life.
The quest for the healthy baby should be
put in proper perspective
There should not be prejudice against the
“unhealthy”
Paul Ramsey (1972)
“Three things are said to evidence the
wisdom and greatness of the Chinese
people. They invented gunpowder and
failed to invent firearms. They invented
printing, and didn’t think of newspapers.
They invented the compass and failed to
discover America.
A similar attitude, I believe, should be adopted
toward future possible applications of
biomedical knowledge…. Leon Kass,….has
written: ‘when we lack sufficient wisdom to do,
wisdom consists in not doing. Caution,
restraint, delay, abstention are what this
second-best (and, perhaps, only) wisdom
dictates with respect to the technology for
human engineering…. We must all get used
to the idea that biomedical technology makes
possible many things we should never do’.”
Paul Ramsey, “Genetic Engineering,” Bulletin of
the Atomic Scientists [December 1972]: 14
1940
The wisdom of not using the new power?
TUTORIAL DISCUSSION TOPICS:
The President’s Council on Bioethics,
Beyond Therapy: Biotechnology and the
Pursuit of Happiness (2003)
Read, in particular, Section C “Ethical
Analysis” of the Report.
1. Explain the Report’s concerns for safety in
the eugenic application of PGD.
2. Explain the Report’s concerns for
equality in the eugenic application of
PGD.
3. Explain the Report’s concerns for the
consequences for families and society in
the eugenic application of PGD.
4. Critically evaluate the Report’s concerns
above.