NZORD Newsletter 2004 #12 - 13 December 2004

Hello everyone,

In this issue:
1 - Opportunity to contribute to research on rare disease risks and ethics.
2 - Bioethics Council’s next public discussion topic - Xenotransplantation.
3 - Emerging issues for Public Health in New Zealand.
4 - Living with Disability in New Zealand.
5 - Changes to system of ethical review now in place.
6 - Fourth report on Disability Strategy implementation.
7 - NZORD events calendar for 2005.
8 - Environmental Support Services Review - Your chance to comment.
9 - Study opportunity in not-for-profit management.
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1 - Opportunity to contribute to research on rare disease risks and ethics.
Dr Ruth Fitzgerald from Otago University is recruiting parents and prospective parents to participate in research on ethical decision making, social issues and emerging technologies, related to the risk of having a child with a rare genetic disease. Click this link to read more and to find Ruth’s contact details.

2 - Bioethics Council’s next public discussion topic - Xenotransplantation.
Hot on the heels of its recent report on the use of human genes in other organisms, the Bioethics Council is preparing for discussion and public consultation on Xenotransplantation, the use of animal-to-human transplants, or use of animal tissue or cells in treating human patients. Though not currently permitted in New Zealand, this procedure is likely to be seriously considered in the future as the demand for organ donors outstrips supply, and as technical issues are resolved. Click here to read the preliminary notes from the Bioethics Council website (from the National Library of New Zealand's National Digital Heritage Archive).

3 - Emerging issues for Public Health in New Zealand.
The Public Health Advisory Committee has issued a discussion document and seeks responses by 15 December 2004. Click here for the introductory page on the PHAC website [link no longer active], and links to the full document. It is interesting to note the broad perspective being adopted in much of the discussion on this topic. This is very positive stuff about collaboration and partnerships, but surprisingly very little about the impact of genetics and other new biomedical knowledge, and how the impacts of these factors might be incorporated into public health policy. NZORD’s submission will urge that these matters are integrated into population-wide health policies. Most rare disorders have a significant genetic component, and a failure to integrate genetics into public health policy would be a major disadvantage to the approximately 8% to 10% of the population affected by rare disorders.

4 - Living with Disability in New Zealand.
This is a comprehensive report on the status of people with disability in New Zealand, and provides a descriptive analysis of results from the 2001 post-census Household Disability Survey and the 2001 Disability Survey of Residential Facilities. It is a very substantial document and is available online in Word or PDF formats from the Ministry of Health website. Shortened summary versions of the report will be available later in print, Braille and other formats. The full version will be a valuable resource for researchers and those interested in the who, what, when, where and why of disability in New Zealand.

5 - Changes to system of ethical review now in place.
Long-awaited changes to the ethics committee structure are now in place and researchers should find a more user-friendly system now that the total number of committees is reduced and a multi-region committee avoids the need for numerous applications. Issue 1 of Ethics Review, a new newsletter on ethics, is available online at the Ministry of Health website [No longer available from Ministry of Health; Click link to the New Zealand Health and Disability Ethics Committees website for up to date information about ethical review in NZ].

6 - Fourth report on Disability Strategy implementation.
We should be expecting some solid progress after four years, and the Minister for Disability Issues seems pleased with the results to date. Click here to select the full report in Word or PDF from the Office for Disability Issues website. In a special message appended to the official report, DPA, the Assembly of People with Disabilities, is noting the progress but calling for the bar to be raised. This highlights the need to constantly monitor progress and ensure that complacency does not creep in.

7 - NZORD events calendar for 2005.
Send us details of your 2005 event prior to New Year so it can be included in our January update of our events calendar for support groups’ activities. We’d much appreciate you sending information prepared in similar format to the 3 or 4 line summaries on our existing calendar. Click here to view.

8 - Environmental Support Services Review - Your chance to comment.
The Auckland Disability Resource Centre has been funded by the Ministry of Health to review the system by which disabled people access equipment such as mobility aids, housing modifications and communication aids. If you’d like to complete a survey form on your experiences, contact Julianne McEldowney Email julianne@disabilityresource.org.nz

9 - Study opportunity in not-for-profit management.
The Management School at the University of Waikato is offering on-line study for a Post Graduate Diploma in managing not-for-profit organisations. Information about enrolment, including the scholarships available to assist with tuition fees, can be obtained from www.mngt.waikato.ac.nz/community.

Regards, John

John Forman
Executive Director