Charities Commission Registration CC22512

2007 Genethics essay competition for Yr 11-Yr13 students: The storage and use of Guthrie Card blood spots in New Zealand.

The Royal Society of New Zealand, The Bioethics Council, and the New Zealand Organisation for Rare Disorders, are proud to offer the fourth annual New Zealand Genethics essay competition for secondary school students.

The 2007 event offers a unique opportunity for students to contribute directly to the development of important public policy for New Zealand.

This competition will run parallel to a public consultation being conducted by the Ministry of Health’s National Screening Unit and its Newborn Metabolic Screening Advisory Group, as a prelude to giving advice directly to the Minister of Health on policy relating to consent for the “Guthrie card” screening test on newborn babies, and on issues relating to the privacy, storage and use of the blood spot cards and information contained in them.

All essays submitted for this year’s competition will be included in the submissions analysed by the National Screening Unit prior to formulating their advice to the Minister.

Prizes offered by NZORD are $600 for the winner, $300 for second and $100 each for the next three place getters.

Finalists will be flown to the Sky City convention centre in July, courtesy of sponsorship funds provided by the Bioethics Council of New Zealand, to present their arguments at a special session at the Annual Scientific Meeting of the Human Genetics Society of Australasia. Prize winners will be selected by a judging panel at the event.

Note:
A condition of entry into this competition is that you agree to your essay being forwarded on to the National Screening Unit at the completion of the competition as part of the public consultation process.
Such submissions may be subject to release under the Official Information Act. If you wish your name to be withheld from your essay if it is requested under that Act, you will need to state this on the entry sheet for your essay.

Entries need to be sent to Debbie Woodhall, Royal Society of New Zealand, PO Box 598, Wellington by 5.00pm on the 5th June 2007

Essay topic

The storage and use of Guthrie Card blood spots in New Zealand. What is your view on an appropriate public policy on storage of these cards, on who can gain access to them, and for what purposes?

Prepare an essay of 1500 words discussing the newborn metabolic screening programme, considering the ethical issues associated with storage and use of the cards, and giving advice to the National Screening Unit on public policy that should be implemented to manage the interests of screening participants and the interests of society.

Essay Selection Criteria

Essays will be assessed according to the following criteria:

1. Demonstration of a basic understanding of the science, genetics and informed consent processes underpinning newborn screening for metabolic diseases in New Zealand, including a basic understanding of the governance arrangements for this screening programme. (approx 500 words)
2. Demonstration of an understanding of the ethical and social implications of the long term storage of blood spot cards and the resulting questions of privacy, access by police, and requests for access by researchers. (approx 800 words)
   • consider the benefits and risks to the baby, their family and to society of the current arrangements for access to the blood spot cards after the screening process has been completed
   • consider the benefits and risks to the baby, their family and society from possible future uses of the cards that may arise from long term storage
   • consider whether existing governance arrangements and policies give adequate protection to the interests of the baby, their family and society, or whether such arrangements should be changed
   • consider whether the storage time for blood spot cards should be altered to enhance benefits or reduce risks
3. Conclude your essay with summary advice (approximately 300 words) to the National Screening Unit on the following questions related to the “storage and use” section of the public consultation on the newborn metabolic screening programme:
   • Whether current access by the New Zealand Police is appropriate and whether any changes to access arrangements should be made
   • How long the blood spot cards should be stored for
   • Whether the proposed dual notification and approval process for potential future use of the cards gives adequate protection for the programme

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.

New Zealand Final Presentation Criteria:

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

• ability to communicate ideas and arguments effectively,
• ability to engage the audience,
• ability to present a balanced and informed discussion of the issues arising from the topic.

References:

You might find some of these web sites useful:

The New Zealand Ministry of Health National Screening Unit 

Report from the NZ Privacy Commissioner on storage and use of Guthrie cards

Memorandum of Understanding between the Ministry of Health and the New Zealand Police relating to the disclosure of newborn blood spot samples and related information

The UK Newborn Screening Programme Centre - Policies and Standards (Note: link updated 12/2008)

The Human Genetics Society of Australasia - Policy statement on the retention, storage and use of sample cards from newborn screening programmes

Gamma: In the Blood: New born Screening - (Note:  link no longer active 12/2008)

Glossary:

A good glossary of terms can be found on the website of the UK Newborn screening Programme (Note: link updated 12/2008)

Entry Form

Download in MS Word format