GenETHICS Scenarios

							GenETHICS Scenario 1

Genetic Screening


A mutation in a gene that causes deafness has recently been identified.
A number of employers in the airline industry are concerned about this finding and want to screen prospective new
employees for carrier status of the 'D' allele. They will refuse to employ people as pilots or flight attendants who might be
adversely affected by the pressure changes associated with flying since they are concerned about the safety of their
employees and customers, and possible litigation issues.

The issue

Should employers be allowed to screen potential employees using this genetic test?

Questions

Here are some questions for you to consider in responding to the issue.

1. What would be the advantages of screening for carrier status by the employer?
2. What would be the disadvantages? Consider both the advantages and disadvantages from the perspective of everyone
involved.
3. Would you agree to a pre-employment test? Give reasons for your answer.
4. Would it be a good social policy to have compulsory pre-employment screening for carrier status for this gene?
GenETHICS Scenario 2

Gene Fix

GENE dreams, the Eutopian biotechnology company that brought you the "BABY BODY microchip", has just announced the
release of a "new and even better" technology to ensure the health of your newborn child.

Previously, GENE dreams could diagnose genetic conditions but if the parents did not want a baby with that condition then
the embryo would be discarded. GENE dreams has now perfected gene therapy techniques that will allow parents to
correct gene alterations detected by their "BB microchip". The mutations detected, if untreated, could cause deafness, short
stature or a predisposition to breast or colon cancer in the child. Instead of an abortion, "Baby Body gene fix" will allow a
quick and easy correction of the mutation.

The DNA microarray "BB Chip" would screen embryos generated by IVF techniques even before they are in the mother's
womb. If a gene mutation is found, an adenovirus would be used to insert a correct copy of the mutant gene into the
embryo. Every cell in the baby's body will contain the new gene and it will be passed on to their children, ensuring healthy
children for generations to come. GENE dreams claims that this technology is very safe and has had a success rate of 99%
in their trials. A leaked document, however, has shown that of the 50 babies born so far after using this technology, two
have developed a rare genetic condition called retinoblastoma.

GENE dreams commented vigorously that "it is the right of every parent to choose whether or not to have a baby with or
without a disability and to desire the best possible health outcomes for their children". A spokeswoman commented that up
to 4% of babies from normal conceptions are also born with a disability, and that there was no need for alarm due to the 2
reported cases of retinoblastoma. She said that they have developed the technology to ensure choice for parents willing to
pay the modest price of Eut$20 000 per gene therapy treatment, and that it should appeal particularly to religious groups
opposing abortion, since it provides treatment rather than discarding embryos.

Issue

Would you approve the use of the "Baby Body gene fix" technology in Eutopia?

Your response should include arguments for and against this technology.

Questions

Here are some questions for you to consider in responding to the issue.

1. Should deafness and short stature be discriminated against?
2. How would you feel if you‟d paid the $20,000 and your child was born with retinoblastoma?
4. Who should pay? What if you cannot afford to pay?
5. Who has the right to decide which „conditions‟ are acceptable and which are not?
6. What are the long term impacts of inserting modified genes into humans? Are there potential side effects?
7. What are the social implications of screening embryos for non life threatening conditions?
8. Have you examined the four principles of bioethics?
GenETHICS Scenario 3

Embryo selection

The parents of a five year old girl who has leukaemia are pleading with the Assisted Reproduction Authority to be allowed to
select an embryo that will produce a brother or sister who can save her life. In an Australian test case Leonard and Celeste
Ryan want to use IVF combined with gene testing (Preimplantation Genetic Diagnosis or PGD) to create and genetically
select embryos that are a match for their five year old daughter Sophie, who has acute lymphoblastic leukaemia. These
services have recently become available at the Simfiscal Fertility Clinic.

Sophie has already undergone treatment including intensive chemotherapy, where drugs were injected into her
bloodstream everyday during long hospital stays. "To have to watch your child suffer through this is every parent's
nightmare," says Mrs Ryan "Sophie just wants to be like the other kids. Now that she has had a relapse the best chance for
our Sophie is a cord blood cell transplant from a matched brother or sister". Mrs Ryan said that she and her husband
wanted another child anyway, provided the child was healthy and if the child could help Sophie what a blessing that would
be.

If approved, the Ryan‟s would create embryos using their own eggs and sperm via IVF. Following embryo screening,
Celeste Ryan would have the 'selected embryo' (which would be matched to treat Sophie) implanted. If all goes well with
the pregnancy, stem cells from the umbilical cord would be collected after the birth and infused into Sophie's blood stream.
Despite sounding simple, recent statistics suggest that only one in five IVF cycles results in pregnancy. In a similar case, an
American couple underwent four IVF treatment cycles, and of five suitable embryos only one survived.

In the ethical debate following the news of this proposal, critics have accused scientists of playing God in marrying genetic
testing and IVF in this way and of creating "designer babies". Some ethicists expressed concern that this child will not be
loved for itself but simply for the spare parts provided.

Dr Lance Simfiscal from the Simfiscal Fertility Clinic denies that this procedure is genetically engineering "designer babies".
"It is about diagnosis, treatment and saving a life, we are not designing anything" Dr Simfiscal said. Sophie's father Leonard
Ryan said, "it is very easy to conjure up all kinds of objections when you haven't been put on the spot yourself. The desire
we have to help our little girl is one of the deepest human impulses and people shouldn't dismiss this so easily." They ask if
when the embryo is being selected it could be a male embryo with matching tissue type to Sophie.

Issue

Imagine you are on the ethics committee hearing the Ryan's case. You have to make a decision on this procedure.

Questions

Here are some questions for you to consider in responding to the issue.

1. Is it acceptable to select and give birth to a child to save another child's life?
2. Should this procedure be passed by the committee?
3. The procedure is very expensive. Who do you think should pay the government or the parents?
4. Should the Ryan's be allowed to select the sex of their child?
GenETHICS Scenario 4

A Heartfelt Quandary

Grace has had a hard time, to say the least. Eighteen months ago her 34 year old brother died mysteriously in his sleep,
and just six months ago a young cousin collapsed and died at a rock concert. Grace has very few memories of her father,
who died suddenly when she was just five years old. All three deaths were caused by heart attacks.

Grace‟s medical and family history indicated that she might be at risk of Hypertrophic Cardiomyopathy. After much
deliberation she decided to undergo genetic testing. She was recently tested and found to have a gene change (mutation)
in the MYH7 gene associated with Hypertrophic Cardiomyopathy. While she has taken her doctor‟s advice to modify her
lifestyle, including avoiding competitive sports and strenuous exercise, she plans to keep up her job as the local school bus
driver.

“There‟s no way I‟m telling my boss about this,” Grace said to her doctor. “My husband left me recently after his business
went bankrupt and it‟s up to me to support my two kids. My boss would have me out the door in a flash if he thought there
was something wrong with me, and then what would I do? I don‟t know how to do anything else. I‟m taking care of myself,
I‟m a vegetarian and I do yoga twice a week. That‟s more than I can say for some of the other drivers. They‟re fat and
smoke like chimneys; they‟ll drop dead before me.”

“Mr Moral Quandary works as the receptionist for Grace‟s doctor. He is a member of school council, and his two children
aged 14 and 16 travels on the local school bus. He is aware of Grace‟s test results and plans to inform school council of
Grace‟s genetic risk status.

“It‟s a question of the broader interests of the community being more important than Grace‟s right to privacy. My children
travel on that bus and I would be remiss in my duties if I ignored the fact that she is endangering our community‟s most
precious assets,” he said.

Mr Quandary‟s plans have enraged his wife, Justice Quandary, who is a prominent civil rights activist. “Grace will suffer
discrimination if you reveal her genetic status to the school committee”, she argued. “I want our children to remain on the
bus to demonstrate the importance of civil freedom. Plus, how do you know what the test results mean? Grace may be at
no more risk of dropping dead than you or I,” she said to her ex-husband.

Issue

What would you do if you were in Mr Quandary‟s position? Would you inform school council,
yes or no?

Your response should include the pros and cons of Mr Quandary informing school council.

Questions

Here are some questions for you to consider in responding to the issue.

1. Who has the right to know?
2. Examine all the points of view.
3. How would you feel if you were a student on the bus?
4. Would parent concern be valid?
5. Who is at risk? Are there any other potential sources of risk?
6. Should employees disclose information about „potential‟ health risks?
7. Have you examined the four principles of bioethics?
GenETHICS Scenario 5

Helping boys with muscular dystrophy


Scientists at 'We Will Get You Moving' Inc. (Get Moving Inc.) have recently discovered a treatment that may offer new hope
for boys with muscular dystrophy.
Muscular dystrophy makes muscles waste away. This is because the gene for a protein called dystrophin is altered and
leads to death of muscle fibres. The gene is on the X chromosome, which means boys are affected. Muscular dystrophy is
very serious, with most affected boys requiring wheelchairs by their teenage years and do not usually survive beyond their
early twenties. As yet, there is no effective treatment or cure for the disease.

Scientists at Get Moving Inc. have discovered a chemical (UtX) which is usually present only in very low levels in muscle
cells. High levels of UtX result in increased activity of the Ut gene. The Ut gene produces a muscle protein called utrophin
that is similar in structure and function to dystrophin. Increased utrophin has been shown to compensate for the lack of
dystrophin in mice with muscular dystrophy.

Scientists reason that if UtX is supplied to muscle it will improve the health of those with muscular dystrophy and reduce the
muscle wasting. Researchers have now submitted an application to their Human Research Ethics Committee and G-TRAP
(Gene-Related Therapies Advisory Panel) to conduct clinical trials using UtX on boys with muscular dystrophy. As there is
no effective treatment now, they argue that clinical trials should start immediately as this treatment is the only hope for
those with muscular dystrophy.

The $100 million in funding required for these trials will be provided by the pharmaceutical giant, DrugsRU Corporation.
They want to develop new technologies that will produce UtX and similar products in large amounts for commercial sale. It
is possible that the treatment could also be used on healthy individuals to enhance sporting ability, increase muscle bulk
and improve cardiac output. This could have a significant impact on major sporting events, such as the Olympic Games and
professional sporting competitions, by increasing the ability of athletes beyond current limits. UtX occurs naturally in the
body and is degraded after 28 days, hence, it would be virtually impossible to detect in athletes using it in training programs.
Possible side-effects of increased utrophin production in healthy mice have not yet been investigated.

Issue

Should clinical trials of UtX for boys with muscular dystrophy be approved?

Outline your response as a member of the ethics committee reviewing this application?

Questions

Here are some questions for you to consider in responding to the issue.

1. Who is paying for the research? Is there a bias?
2. What are the potential long term effects?
3. Who will benefit?
4. Who could be harmed in the research?
5. Should sporting groups have access to the technology?
6. Who will have access to the new technology?
7. Have you examined the four principles of bioethics?