The Ethics Review Board must balance the reproductive autonomy and health interests of patients with concerns about eugenics and discrimination. PGD may be permitted to avoid passing on serious genetic diseases like cystic fibrosis but not for traits like height. Producing cord cells to help an existing child with Fanconi's anemia could be allowed if the procedure is limited and does not become a gateway to other uses. Sex selection for family balancing requires further discussion due to societal implications.

2. From Greek (eugenes) "well-born" from eu,
"good, well" and genos, "race, stock, kin”
It is a set of beliefs and practices that aims
at improving the genetic quality of the
human population.

3. “Good genes” or
“good birth”
The use of genetics
to improve the
health of a
population

4.  “The best men must have intercourse with the
best women as frequently as possible, and
the opposite is true of the very inferior.”
 Proposed the establishment of a fixed lottery
in which each person was assigned a
“marriage number” corresponding to a
quantitative assessment of their fitness
 He believed this system would lead to a
predictable improvement of the human race.

5. Sparta: phenotypic selection through
infanticide
• Weak or undesirable babies were abandoned
Rome:
• Fourth Table of Roman stated that deformed
children would be put to death

6.  Inspired by Darwin’s Origin of Species
 Believed societies in favor of spending
resources on the weak were in opposition to
natural selection
 Elitist, believing strongly that some people
were both mentally and physically superior to
others
 Thought we should make “enhanced” humans
by essentially speeding up evolution
 His approach to eugenics was based upon
social statistics

7. Positive eugenics (Francis Galton):
Encourage people with “good genes” to
have more children
Negative selection: Don’t allow “bad
genes” to be reproduced
Forced sterilization or abortion
Marriage restrictions
“Euthanasia”

8.  Practiced negative and positive eugenics
• Forced sterilization, euthanasia
• Awarded Aryan women for having many children with Aryan
men
 Some argued that the Holocaust was "a vast dysgenic
program to rid Europe of highly intelligent challengers to the
existing Christian domination by a numerically and politically
minuscule minority.” ~Seymour W. Itzkoff

9. Alexander Graham Bell recommended
deaf individuals not be allowed to marry
Thirty states adopted legislation to perform
forced sterilization on those deemed
“mentally unfit.”

12. Genetic testing
Prenatal genetic testing
Pre-implantation genetic diagnosis
Genetic counseling for prospective parents

14. Predictive testing: Polycystic kidney
disease
Fluid-filled sacs grow on kidneys, possibly other
organs
Autosomal dominant (50% chance if one parent is
affected)
Onset: 30 to 40 years, possibly earlier/later
No cure available; life-prolonging treatment
possible (dialysis or kidney transplantation)

15. “An informative and supportive dialogue regarding a
known, potential, or unsuspected genetic condition.”
Manic-depressive illness (Kay Redfield Jamison)
“To whom is the genetic counselor responsible?
The patient or married couple alone? Other family
members? Future generations who may suffer
increasing numbers of persons with genetic
defects?” Ruth Macklin, “Moral Issues in Human
Genetics: Counseling or Control?”

16. Cystic fibrosis
Recessive (25% chance if both parents are
carriers)
Life expectancy: 30 years
Carrier test available to pregnant couples or those
planning to become pregnant

17. Pre-implantation genetic diagnosis

19. Fanconi Anemia:
Recessive (25% offspring affected)
Dismorphologies, mildly reduced IQ, leukemia by
6-7 years old, require hematopoetic stem cell
transplant (bone marrow) to survive, donor must
be HLA (human lymphocyte antigen) matched

21. 6-year-old Molly affected by Fanconi Anemia
(FA)
Nashes hope to have more unaffected
children
Seek 2-stage PGD: FA- & HLA match for
Molly
5 IVF cycles to get 1 matched embryo
Adam born 8/2000 in Denver; cord blood
flown to MN for transplant in late 9/2000

22. We are the Ethics Review Board for General Hospital, a
local public hospital. The Review Board has to
determine a policy for the hospital regarding whether
PGD should be permitted for the following purposes:
to help two CF carriers avoid passing on the disease;
to help a couple produce umbilical cord cells for an
existing child with Fanconi’s anemia;
to help a couple select the sex of their child for “family
balancing”;
To help a short couple produce a taller child.