Donating human tissue for research use

1
Donating human tissue for research use whats
legal, whats ethical and whats personal

• Helen McKelvie Natalie Morgan

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Family Liaison

• Tissue donation for transplantation
• Tissue donation for research
• Tissue retention for diagnosis
• Retrospective organ retention inquiry

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Family Liaison

• Donor families offered
• 12 months of contact and follow up
• Evaluation of service
• Access to grief counseling via State Coroners
  Office
• Memorial services

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Family Liaison

• Coroners Act 1985
• Human tissue act 1982
• Ethics committee
• Advisory board
• NHMRC guidelines
• National autopsy standards
• Transplant associations

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Retrospective organ retention Inquiry

• More than 195 inquiries since 2001
• Approximately 5 involve retention
• All inquiries offered face to face meeting

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Retrospective organ retention inquiry

• 16 telephone contacts
• 3 off site visits involving nursing, medical and
  social work support.
• Direct contact with SNOK 6 months
• Independent psychologist
• Financial settlement

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Retrospective organ retention inquiry

• Legal claim made on the basis of
• lack of informed consent for autopsy
• Lack of information regarding the possibility of
  organ retention
• Resulted in psychological injury

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Donation for research

• No tissue donation required
• Non invasive
• Family consulted regarding involvement
• Family called to offer verbal consent the
  following day

9
Donation for research

• Requesting participation in a research project
  was to place unreal expectations on us at a
  devastating time.

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Donation for research

• Issues resolved with a meeting
• Researcher provided a copy of medical image
• Family refused opportunity to withdraw from study

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Consent to tissue donation

• If the tissue is not suitable for
  transplanataion
• I/we authourise the Donor Tissue Bank of Victoria
  to use removed tissue for scientific purposes in
  developing and improving tissue donation
  processes and techniques.

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Consent to tissue donation

• Family request cremation and return of tissue
• Cremation to occur on the day designated
  auspicious

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Evaluation

• 80 of those who responded had a positive view of
  participating in medical research
• 61felt more favorable after experience with the
  process
• 38 no change
• 1 less favorable

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Partnership in research

• It gave my daughter a way to talk about her
  fathers death and also whether we would allow the
  research gave us something to make a decision
  about

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Partnership in research

• It would be helpful if there was following
  information of what was being achieved in this
  research area. I believe this then supports the
  family decision to support research.

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Partnership in research

• Knowing his death helps others helps me and that
  is what he would have wanted