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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Sensitive Data can be Shared (Michael Martin | 2014)0

Posted by Admin in on August 9, 2018
 

A discussion of the legal and ethical context of publishing and sharing sensitive data with two experts who contributed to the ANDS Guide to Publishing & Sharing Sensitive Data.

Provides practical advice about sharing human data as part of ethical research practice (YouTube, 40 min) Baden Appleyard, Barrister, also offers insight into legal requirements.

Martin, M (2014) Sensitive Data can be Shared.
https://www.youtube.com/watch?v=FopQez8P-lU&feature=youtu.be

Vulnerable patients – easy targets for companies willing to sacrifice ethics for profits – The Hill (Jody Lyneé Madeira | May 2018)0

Posted by Admin in on August 5, 2018
 

A small medical device has just become embroiled in a large controversy, suggesting violations of fundamental ethical norms and settled principles of scientific research.

Stories like this highlight why people living with a chronic medical condition (and their families) need to be discerning and cautious when it comes to glowing media reports about amazing new treatments.

At first glance, the Bridge — a neuro-modulation device that attaches behind the ear — resembles a hearing aid with wires. The Bridge received Food and Drug Administration (FDA) clearance in November 2017 for easing opioid withdrawal symptoms during detoxification; before, it was approved only for acupuncture.
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This device is supposed to help patients get through the difficult opioid withdrawal process. It’s used in pilot programs in several states, available in at least one major Indiana hospital chain, and is starting to be covered by insurance.
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Ethical conduct in research with Aboriginal and Torres Strait Islander Peoples and communities0

Posted by Admin in on August 2, 2018
 

In general, ethics guidelines provide a set of principles to ensure research is safe, respectful, responsible, high quality, of benefit to Aboriginal and Torres Strait Islander people and communities and of benefit to research. Ethical conduct in research with Aboriginal and Torres Strait Islander Peoples and communities: Guidelines for researchers and stakeholders 2018 (the Guidelines) defines six core values — spirit and integrity, cultural continuity, equity, reciprocity, respect, and responsibility. Applying these values and other ethical principles will ensure that research conducted with or for Aboriginal and Torres Strait Islander people and communities, or their data or biological samples, is ethically conducted. 

The Guidelines are intended for use by researchers and ethics review bodies, such as Human Research Ethics Committees (HRECs). Aboriginal and Torres Strait Islander Peoples, individual research participants, participant groups, the wider community and other stakeholders may also find the Guidelines useful. 

Advice about how to use the Guidelines is provided on page 13. This includes information about Keeping research on track II 2018, which describes how the values and principles in the Guidelines can be put into practice. Additional principles and concepts relevant to research with Aboriginal and Torres Strait Islander Peoples and communities are set out on pages 15 to 19. Key terms, a glossary and a list of further resources are also provided. More information about the Guidelines is available on NHMRC’s website.

Read the rest of these  guidelines

Keeping research on track II0

Posted by Admin in on August 2, 2018
 

This guideline aims to support research participants, Aboriginal and Torres Strait Islander Peoples and communities to:

  • Make decisions that ensure the research journey respects Aboriginal and Torres Strait Islander Peoples’ and communities’ shared values, diversity, priorities, needs and aspirations.
  • Make decisions that ensure the research journey benefits Aboriginal and Torres Strait Islander people and communities as well as researchers and other Australians.
  • Recognise and understand their rights and responsibilities in being involved in all aspects of research.
  • Better understand the steps involved in making research ethical.

The information in this guideline comes from two key national publications which set out the requirements for the ethical conduct of research:

  • National Statement on Ethical Conduct in Human Research (the National Statement)
    The National Statement is the principal guideline setting out the requirements for the ethical design, review and conduct of all human research in Australia. The National Statement is about four main principles: respect; research merit and integrity; justice; and beneficence. The National Statement provides guidance on the ethical considerations that are relevant to the way that research is designed, reviewed and conducted.

Read the rest of this guidance material

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