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Ethics: Genetic Testing

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Han Gao

on 6 October 2014

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Transcript of Ethics: Genetic Testing

Ethics: Genetic Testing

Outline
1. Introduction to Genetic Screening
Genetic Screening: "Playing God?"
Genetic Testing will be able to "identify an unborn child’s risk of developing chronic diseases later in life and possibly shed light on other traits, such as athletic ability and intelligence."

Is this an obvious benefit?

To find talent for sports, music, dance, or intelligence.
Video: An example debate
Is genetic testing practical and useful in athlete selection for the Olympic Games?
When should they take the test?
Do we have rights to deprive the children without talent of the opportunity to become professional athletes?
How much would the test help to improve a country's competitive power in the Olympic Games?
A scenario
There is a lonely father whose wife and children are in overseas, he sends $100,000 to support them every year. His company asked for a genetic screening test to see if he will still be able to work in the future.

Doctor – Would you advise the father to take the test?
Lonely father – What would you do if the test turned out positive for a disease?
Company – Would you fire the father if the test turned out positive for a disease?

Prenatal genetic testing (during pregnancy)
Neonatal genetic screening (Newborn screening)
Carrier screening (adult)
Types of genetic screening
Introduction to Genetic Screening
Members:
Han Gao
Yuewei Tang
Daniel Yang
Suk Ho Shin

2. Ethics Issues on Genetic Testing
Emotional Effects on the Tester
"Playing God"
Discrimination
Decision Making for Babies and Children
3. Conclusion
Conclusion:
Technology
Change and Progress are not the same things, especially ethically.
Eugenics: Super Genetical Human Being
Nowadays, parents are doing genetic tests for their children to find out whether they can be a professional athletes, dancers or musicians.
Is it good for children to know they have talent or not in some specific areas?
Pros & Cons
Eugenics: Genetic Testing for Unborn Baby
Class Debate: 10mins
What opinion do you hold on genetic testing for Olympic athlete selection?
My Opinion:
Michael Phelps (American Swimming Star) has long arms, which is his genetic talent. We cannot deny that the genetic testing can help us to challenge some limitations of human beings or find some talent, but we do not need to take this result so seriously.
However, remember that
Success always comes from hard work.
The Olympic spirit is not all about winning.

Improvement in Technique:
No needles
Less risk for the mother
No infection
Accurate
Cheap and affordable
Potential Ethical Problem
More testing leads to more abortions
Where is the line?
Genetic screening: 

Testing of a population to identify individuals who are at risk for a genetic disease or for transmitting a gene for a genetic disease.

The certain gene informs that the risk of having a particular disease is higher
than others in the future.

What is genetic screening?

Aim of genetic screening
To determine the risk of a developing specific diseases.

A couple would like to know the gender and health of their baby
A boy is passionate about soccer and his parents would like to know whether he has the talent for it
A women in her 30s worrying about the risk of breast cancer she might have

What could they do?
Genetic screening can help!
Advantages & Disadvantages
Advantages:
Early detection
Early plan
Ethical Issues:
Emotional Effects
"Playing God"
Discrimination
Baby Problems

Imagine:
....
Your child is really passionate about soccer and desires to become a professional soccer player. However, he is genetically screened, and the results say that he is talented in swimming but not in soccer, that is to say, if he is well-trained he may become a swimming star, then what will you do?
Stop him from soccer but encourage him to swim.
Support him and encourage him that he can definitely become a soccer star .
Do nothing just let him go and choose what he likes.
Pros:
Cons:
Pros:
1. Help to find the future champions
2. Help the kids who want to be professional athletes to find the correct direction.
3. To challenge human being limitation and record.
...
Cons:
1. The Olympics Spirit is not just to win...
2. The test can not prevent children to chase for the dream to become professional athletes...
3.It cannot work because the gene for athlete performance is not simple...
4. The hard work outweighs the genetic aspects...
......

Ethical Problem:
Almost 90 percent of children diagnosed with Down syndrome are aborted.
Video: Think about these questions
Do the parents have rights to do the abortion at at any time and any situation?
Where is the line?
Discussion: Where is the line? 3mins
Should the government set up a law for abortion?
The healthy care for the tested unhealthy baby.
Make the doctor decide whether to keep the baby depending on the disease?
Genetic Screening: Emotional Effects
Test results
False positive/negative
Counseling
Affects family and relatives-Dilemma
Adoption

The father was diagnosed with a genetic disorder. He knew that instead of dying by disease, the life insurance payout for death by accident would 4 times larger. To pay for his son’s 2 years education fee, he decided to jump off from a cliff. He failed to kill himself, and his spines and organs were damaged, causing paralysis of the lower half of the body.

However after hospitalization, he found out that the screened result was misdiagnosed. He was scheduled for promotion in his small business company but he lost the job. Because of the deliberate accident, the insurance benefit was not given. He earned $5,000 compensation from the hospital and still living in a sickbed.


The reality
Genetic counselling
It involves an explanation of the results and the implications in terms of probabilities, dangers, diagnosis and treatment.
How can he help?
Support clients to manage emotional effects
Discuss family issues, including relationships and family style
Include psychosocial issues in both letters and written literature
Include counselling as standard with testing, to reduce belief that family members must have mental health problems

Discussion:
Do you think that counselling skills training is essential for health professionals working in this area, or just desirable?

Influence of the test:
Outcomes of negative result:
Belonging to the family-facing the common threat-disconnection
Mental health problems-delayed grief
Mourning for lost opportunities
Specialness, meaning to life

Outcomes of positive result:
Psychosocial death-relationships in family change, e.g. lack of dependence by other family members on person found to have the mutation.
Loss of uncertainty-of one type only- hyper vigilance may follow
Inability to be carer, especially for parents

Emotional Effects:
Guilt

Consolation

Discordance in families

Guilt:
Being the survivor (negative)
Causing distress to other members of the family (positive)
Not being able to sympathsise (negative)
Having passed on the condition or risk of the condition (positive)

Consolation (positive):
‘Better and closer’ family by facing the common threat
Value life more
May make family more sympathetic to others
Giving back

Discord in families:
Smoldering anger-arguments over unrelated issues
Different ways of coping
Pressure to seek information or be tested
Skewing of relationships

Adoption:
Genetic Screening: Discrimination
Misuse
Employment
School
Insurance

Decision Making for Babies and Children
Phenylketonuria (PKU)
Two copies of mutated gene
Regular blood tests
Treatment with special diet

Screening pitfalls
PKU Diet:
Some variants are benign
Diet unappetising, expensive
Embryo malformation because of high phenylalaine blood levels
Discussion:
Who should decide whether a baby or child, too young to make a decision for themselves, if they should be genetically screened for this disease?

Parents
– Who would be most concerned about the health of the child, your family and relatives might not have any record of genetic disorders, so there’s no risk to the child
Doctors – Who has the most technical knowledge to make an informed decision
Government – Who has the authority to create laws for mandatory screening

Other Genetic Diseases:
Cystic Fibrosis
Excessive mucus–impairs digestive functions, traps bacteria in lungs
Consume up to 40 capsules daily for digestion
3 hours of airway clearance
Hypothyroidism
Doesn’t produce enough thyroid hormone
Treatment involves supplements
Appendix
Some diseases have no cure or prevention, so early knowledge of having the gene would cause additional worry without any good

The knowledge that a person has a “bad” gene could cause the person to be discriminated by work, insurance, spouse etc.

1) Who decides who should be screened or tested?
2) Which specific disorders should be screened?
3) Who should be providing the screening?
4) Should we screen or test for disorders for which there is no known treatment or cure?
5) What psychological impact might the results have on the individuals involved?
6) Should the results be confidential?
7) If not, who should be able to have access to the information?
8) Should the results be made available to potential employers, insurers, etc?

Genetic screening tests have benefited many families
Misuse of information often leads to discrimination
There needs to be good regulation of this information
False positives and screening of untreatable diseases leads to unnecessary emotional stress
Environmental effects are often not considered
Parents should have the right to screen their children
Misuse:
Test result leak to unnecessary publication or unauthorised use of data by others.

Insurance:
Increased insurance rates for positive results, they want to avoid any insurance fraud.
Employment:
To employ healthy workers and avoid missing work because of future diseases.
School:
Unintelligent students can affect overall school results
Discussion (10 min)
Please split into 2 groups
Group A (Insurance company ) :
Will you force the customer to take the test after the agreement? Why?
If yes, who should pay the test cost and how would you arrange the insurance compensation in the future ?
If no (maybe not forced), how would you arrange the insurance payment and future compensation ?
Group B (Customer ) :
Which one would you prefer, to do the test before or after signing the contract? Why?
How to reduce the cost of the insurance? (The cost of genetic screening should be included if the test is taken before the contract)
Group B: scenario ( For customer)
Insurance company
Test before agreement have to pay 50% for if screened negative, 150% if positive
Test after agreement , have to pay 70% for if screened negative, 130% if positive
Higher future compensation if the test shows negative ( no gene related to diseases)
The genetic screening cost about 10 % of the payment

Discussion Group B
Which one would you prefer, do the test before or after signing the agreement , why?
How to pay low for the insurance and get the highest compensation?
( The cost of genetic screening should be included if do the test before agreement)

Role Play:
Parents:
The baby is tested and the result shows that it is a girl. You want a boy and want to do the abortion.
Doctor:
State your own opinion and make the decision whether you would do the abortion...
Judgement:
According to the conversation, make a final judgement whether the abortion can be done.
References
Hartwell LH, Hood L, Goldberg ML, Reynolds AE, Silver LM, Veres RC (2008). Genetics: from genes to genomes. Boston: McGraw-Hill Higher Education. ISBN 0-07-284846-4.
Peter T Rowley, Devereux N Saller, "Genetic screening and testing", ENCYCLOPEDIA OF LIFE SCIENCES, 2001.
Macer , D. 1990. Shaping genes : ethics , law and science of using new genetic technology in medicine and agiculture
Gostin LO, Hodge JG. Genetic privacy and the law: an end to genetics exceptionalism. Jurimetrics 1999; 40:21-58
Antonucci, et.al. (2002) "Playing God/Perfect Children" Communities of Color and Genetics Policy Project: A report for the Communities of Color and Genetic Policy Project
Jennifer Jongsma, Prenatal Genetic Testing: Do You Really Want to Know Your Baby's Future?, 2007
Hudson, Kathy, et al. Genetic Discrimination and Health Insurance: An Urgent Need for Reform. Science, Vol. 270, 391-93. 1995
Rothenberg, Karen, et al, Genetic Information and the Workplace: Legislative Approaches and Policy Challenges. Science, Vol. 275, 1755-57
Positive test result
:person is carrier of a particular genetic mutation, an increased risk of developing a disease in the future

Negative test result
:Person is not affected by a particular disorder, is not a carrier of a specific genetic mutation, or does not have an increased risk of developing a certain disease

False Positive: You don't have disease but test says that you carry the gene
False Negative: You have disease but test says that you do not carry the gene
Do adopted children have right to access their genetic screening result? What do you think?
http://www.youtube.com/watch?v=8s4he3wLgkM#t=475


False Negative: You had a test and result was negative. However, you died in lung cancer a year after.
Other Genetic Diseases:
Down's Syndrome
Many cases lead to abortion
No "cure"
Galactosemia
Phenylketonuria (PKU) (2014). Retrieved 15 September 2014, from <http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Phenylketonuria_(PKU)>.
What is the diet for PKU? (2008). Retrieved 14 September 2014, from <http://depts.washington.edu/pku/about/diet.html>
Components of the human diet (n.d.). Retrieved 13 September 2014, from <http://www.ib.bioninja.com.au/options/option-a-human-nutrition/a1-components-of-the-human.html>
Fost, N. (1992). Ethical implications of screening asymptomatic individuals. The FASEB journal, 6(10), 2813-2817.
Botkin, J. R., Clayton, E. W., Fost, N. C., Burke, W., Murray, T. H., Baily, M. A., ... & Ross, L. F. (2006). Newborn screening technology: proceed with caution. Pediatrics, 117(5), 1793-1799.
About Cystic Fibrosis (n.d.) Retrieved 15 September 2014, from <http://www.cysticfibrosis.org.au/wa/learn>.
Cystic Fibrosis (2014). Retrieved 15 Sepetmber 2014, from <http://en.wikipedia.org/wiki/Cystic_fibrosis>
Children’s of Alabama Department of Pediatric Endocrinology (n.d.) A Parent’s Guide to Understanding Congenital Hypothyroidism. Retrieved 15 September 2014, from <https://www.childrensal.org/workfiles/clinical_services/endocrine/parents_guide.pdf>.
Difference between Cretinism and Hypothyroidism (2014). Retrieved 15 September 2014, from <http://www.differencebetween.info/difference-between-cretinism-and-hypothyroidism>.
Thanks for your attention
What if the baby is tested with Down Syndrome
Full transcript