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New Zealand GenETHICS Essay Competition 2006

This essay competition for secondary school students in years 11, 12 or 13, is jointly sponsored by NZORD, the Royal Society of New Zealand, and the Bioethics Council. It is the third competition in as many years and reflects the importance the three organisations put on good public discussion of the ethical issues associated with genetics and new technologies. Cah prizes for the winning wentry and the runners-up are provided by NZORD. The Bioethics Council funds finalists' travel to the judging, and the Royal Society provides significant educational and administrative support. The closing date for entries is Tuesday 20 June 2006.

Babies’ best interests or mothers’ choice? Which should prevail?

Four new mothers sitting together in the maternity day room and proudly nursing their wee babies were approached by the nurse to discuss the newborn screening programme for metabolic diseases. “It’s time for the Guthrie Card test”, said nurse Alison. “I’m sure you heard about this at ante-natal classes. It checks for hidden diseases that might show up in infancy in your baby. The tests on the blood spots taken from the heel-prick can warn about some serious diseases and allow treatments that may save baby’s life or prevent serious long term health and disability problems if we know about it soon enough”.

Nurse Alison talked about the diseases that are checked for, handed out the consent forms and brochures from the National Testing Centre, and said she’d be back in an hour with the lab technician to collect their consent forms and take the samples from the babies.

The conversation in the room changed from their birth experience and their aspirations for their child, to talk about health problems that might have to be faced. Sally and Moana both took the form and signed the consent to the samples being taken. Both said they wanted the best health possible for their baby and thought the test was a great idea to guard against serious health problems. “It will hurt my baby and I don’t want to see her cry, but it is worth a few minutes of discomfort to guard against some very serious diseases”, said Sally. Moana agreed. She had been reading about ill health and unexplained deaths in newborns before the first of these tests was introduced in the 1960s and was pleased to know that some of those risks could be guarded against.

Jude, on the other hand, took a different view. “I think there is too much emphasis on the negative side of health. If we concentrate on wellness and channel positive energy to our child along with the best nurture and good nutrition, we can prevent ill health from occurring”, she said. “The chance of my baby being affected by one of these diseases is so remote I don’t think it is worth the discomfort of a heel-prick even for a few moments. I think the test will break the special aura my baby has and I don’t intend to give consent for the test. Besides, our families have never had one of those diseases occur in many generations, so I think my baby is not at risk”.

Lynne was also hesitant but for different reasons. She too had been reading a lot about children’s health and eagerly followed debates about how research was increasing medicine’s ability to detect and treat diseases. “Well I certainly will be signing up for my baby’s test, but I want more tests done than the seven on the list. I want them to test for every known condition that might impact on my child, so I can give her the best chance in life. I think it’s only fair that if more conditions can be tested for, then they should do all those tests”.

Questions:

Do you think Jude should be free to refuse consent for the heel-prick test on her newborn baby?
Do you think Lynne is entitled to have all available tests done from her baby’s blood sample?

Essay Selection Criteria

Essays will be assessed according to the following criteria:

1. Demonstration of a basic understanding of the science, genetics and decision-making process underpinning newborn screening for metabolic diseases (approximately 500 words). Using appropriate references to the scenario:

• What are the principle objectives of newborn metabolic screening programmes?
• What tests are currently included in the New Zealand programme?
• Is family history of these diseases a reliable predictor of the risk of the disease appearing in a newborn baby?
• What standards are there that guide the decisions about which diseases will be screened for in the newborn metabolic screening programme? Why do some tests that could be done get left out?
• What's the difference between DNA testing and metabolite testing?
• New Zealand is changing the technology used for testing the newborn blood spots by introducing a Tandem Mass Spectrometer. What options does this offer to change the range of diseases tested for? If we follow Australian and US recommendations, what groups of diseases are likely to be added to the list of tests?

2. Presentation of a clear description of the present arrangements in New Zealand for informed consent to newborn metabolic screening tests and comparing these to the standard arrangements in most states in the USA.  (approximately 200 words)

3. Demonstration of an understanding of the ethical and social implications of the scenario  (approximately 800 words)

1. Consider the pros and cons of both Jude’s and Lynne’s intentions regarding the screening test for their baby (ethical, social, economic):
   • For the baby’s interests
   • For the parent’s interest
   • For society as a whole
2. Should test be added for diseases that are very likely or certain to occur in adulthood? If that test is positive should the parent tell the child? What benefits or harms might there be for the child?
3. Is there a case for including tests for conditions that do not have a treatment currently available, or where a treatment is very expensive and not funded by the government?
4. Your essay must demonstrate an understanding of contrary viewpoints, with an explanation of why you have rejected or accepted those views.

The content, quality and organisation of your arguments, in relation to the questions asked, will determine your success.

Diagrams or tables may be used and are not included in your word count. You should cite all references you use.

A selection of top quality essays will proceed to the New Zealand final of the competition to be held in Wellington. At the final the authors will present their arguments before a live audience of health professionals, support group leaders and educators, and a judging panel of invited guests.  Cash prizes will be awarded.
 
New Zealand Final Presentation Criteria:

This presentation will be judged according to the above essay criteria, and also the following criteria:

1. ability to communicate ideas and arguments effectively and in an innovative way,
2. ability to engage the audience,
3. ability to present a balanced and informed discussion of the issues arising from the scenario.

References: You might find some of the web sites below useful:

For information on newborn metabolic screening programmes:

The New Zealand Ministry of Health National Screening Unit
http://www.moh.govt.nz/nationalscreeningunit

The Australian Centre for Genetics Education
http://www.genetics.com.au/pdf/factsheets/fs20.pdf

The UK Newborn Screening Programme Centre - Policies and Standards
http://www.ich.ucl.ac.uk/newborn/download/policies_standards.pdf  (NZORD 12/2008 - This page has been updated.  Go to their new webpage at: http://www.newbornbloodspot.screening.nhs.uk/)

The US National Newborn Screening and Genetics Resource Centre
http://genes-r-us.uthscsa.edu

March of Dimes - Quick Reference and Facts Sheet
http://www.marchofdimes.com/professionals/14332_1200.asp

For general information on genetic testing and screening:

New Zealand’s National Health Committee report on criteria to assess screening programmes
http://www.phac.health.govt.nz/moh.nsf/pagescm/683/$File/ScreeningCriteria.pdf

The Australian Centre for Genetics Education - Genetic Testing, Medical applications
http://www.genetics.com.au/pdf/factsheets/fs21.pdf

The Human Genetics Society of Australasia - Position Statement on Newborn Screening Programmes
http://hgsa.com.au/images/UserFiles/Attachments/hgsapolicystatementnewbornscreening020418.03.pdf

For more specific information on ethics and consent issues:

The New Zealand Code of Health and Disability Services Consumers' Rights
http://www.hdc.org.nz/the-act--code/the-code-of-rights

American Academy of Pediatrics Policy statement on ethical issues with genetic testing in Pediatrics
http://aappolicy.aappublications.org/cgi/content/full/pediatrics%3b107/6/1451

The US Star-G program on Expanded Newborn Screening - Financial, Ethical, Legal and Social Issues
http://www.newbornscreening.info/index.html

Glossary: