Author: admin

You are applying for an NIH grant on the genetics of
homosexuality. You plan to collect DNA samples from 1,000 male homosexuals and
1,000 male heterosexuals, controlling for education, income, race, ethnicity,
and other environmental factors. Your goal is to identify genetic variants
associated with homosexuality.
• What are the potential social and ethical implications of
discovering genetic variants associated with homosexuality?
• How should you deal with those implications?
• Should the NIH consider these implications when it decides
whether to fund this study?
• Should an IRB consider them when it decides whether to
approve it?

A group of researchers, consisting of anthropologists,
geneticists, and physicians, identifi ed a rare genetic disease in an
indigenous population of Native Americans (the Beewoks) living on coast of
western Canada. People who have the disease (known Wajan’s disease) have 12 fi
ngers and 12 toes, white hair, blue eyes, and enlarged hearts. People with
Wajan’s disease usually die before age 25 as a result of heart failure. The
Beewoks do not regard this condition as a disease. They believe that people who
are born with this condition are blessed by the gods and have special gifts of
empathy, prophecy, and spiritual healing. They also believe that people with
this condition have been a part of the population since the beginning of time.
The Beewoks also believe that they have always lived on the place where they
are currently living. After studying Wajan’s disease, its genetics, and the
population, the researchers publish an article describing and explaining the
condition and its history in the local population. They refer to the condition
as a “disease” and an “illness.” They say that the people with Wajan’s disease
have “weak hearts.” They also claim that the Beewoks share many unique genetic
variants with Eskimos in northern Alaska, and that it is likely that the
Beewoks migrated from northern Alaska less than 500 years ago. A local
newspaper prints a story about the scientifi c article. Some of the leaders of
the Beewok population learn about the results of the research from the local
paper, and they are very upset about how people with the disease are portrayed
and how the population and its history are described. They demand that the
researchers return their blood samples, and they do not want the researchers to
publish any more articles about them. They also say that they will never allow
any scientists to study them again.
• How could the researchers have avoided this unfortunate
situation?
• What steps should they have taken to protect the Beewoks
and promote their interests?

A pharmaceutical company is developing a gene therapy
protocol for male pattern baldness. The product is a cream that contains a
retrovirus similar to the viruses that cause the common cold. The virus
contains a gene that promotes hair growth. To be effective, the cream needs to
be rubbed on the bald skin and not removed (by washing) for at least three
hours. In animal studies, the cream has successfully grown hair on bald rodents
with few side effects, other than some respiratory symptoms similar to the common
cold. The company would like to begin phase I trials on healthy, adult men with
male pattern baldness.
• Do you see any potential ethical and social problems with
this gene therapy study?
• If you were an IRB member, would you approve it?
• What else would you like to know about this research
before you make a decision?

Investigators at University X are planning to recruit
college students to donate biomaterials for an embryonic stem cell research
protocol. The investigators plan to experiment with different methods deriving
HES cells. They plan to create some embryos by IVF and some by nuclear transfer
from somatic tissue. The investigators will offer the women $5,000 per egg
donation. Each woman can donate up to four times in a year. Sperm and tissue
donors will be paid $50 per donation and can donate once a week. Do you have
any ethical concerns about this plan?

It is the year 2010 and scientists have discovered a gene
that confers an increased risk (25%) for ADHD. A group of educators are
proposing that the state enact a law requiring mandatory screening for this
gene, because studies have shown that early intervention for ADHD can yield
excellent results. If a child tests positive for the gene, parents can be
educated about the condition and what steps to take to provide an appropriate
environment for their child, including possible treatment with medication. The
educators argue that this screening program will be very cost-effective,
because about 10% of all children have ADHD, the test is inexpensive, and the
state can save a great deal of money on special education programs and
medication through early intervention. How would you react to this for your
children?