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Research Ethics and Vulnerability: Ethical Research in Adults with Impaired Decision-Making Capacity

Learn how to conduct ethical research with adults who have impaired decision-making capacity.

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Effectively protect research participants with impaired decision-making capacity

It is your responsibility to protect research participants. Those who have impaired decision-making capacity are incapable of giving informed consent. They may not be able to protect their own interests and merit special consideration by researchers and research ethics committees.

In this course, you will learn the principles of informed consent, decision-making capacity, and ethical conduct of research on adults with impaired decision-making capacity. The researcher and research ethics committee need to protect this vulnerable group.

Informed consent means that potential research participants are given information about the key facts of a project before deciding whether or not to take part. This course will empower you with effective processes for gaining informed consent. This course will also give you a framework to understand at what points consent should be renewed, and how to manage those situations.

Safeguarding your participants

Discover the best practice approaches and oversight to safeguard research participants. People with impaired decision-making capacity should be protected and supported in appropriate ways. We will walk you through effective safeguarding measures and how to implement these through your Institutional Review Board and/or Medical Research Ethics Committee.

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Skip to 0 minutes and 17 seconds Can persons with mental illness or dementia provide informed consent for research? Should we exclude them from participating in research? How do we protect their human rights as research participants? Hi! I’m Dr Julia Patrick Engkasan from the Department of Rehabilitation Medicine, Universiti Malaya. I am a practising rehabilitation physician at the University Malaya Medical Centre. As an academician, I have been actively involved in research and teaching for many years. I head the Research Integrity and Ethics Unit at the Faculty of Medicine. I am also the programme coordinator of Master of Health Research Ethics or MOHRE. Welcome to this course.

Skip to 1 minute and 1 second In the next two weeks, you will learn about informed consent, decision-making capacity, and research ethics in persons with impaired decision-making capacity or DMC in short. This course will provide insights into ethical considerations when conducting a research involving this population. I will take you on a journey that will help you understand some of the key aspects of research ethics particularly informed consent, and learn how you can protect research participants who have impaired DMC. Throughout this course, you will be given articles to read, participate in various quizzes, and attend peer discussions to enable you understand this subject in a deeper manner. I hope you enjoy this course as much as we did in designing and creating it. Have fun learning!

What topics will you cover?

  • Introduction to informed consent in research
  • How decision-making capacity is assessed
  • Importance of research on persons with impaired decision-making capacity
  • Methods to obtain informed consent from participants with impaired decision-making capacity.
  • Safeguarding research participants with impaired DMC

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Learning on this course

On every step of the course you can meet other learners, share your ideas and join in with active discussions in the comments.

What will you achieve?

By the end of the course, you‘ll be able to...

  • Describe content and process of informed consent
  • Explain cognitive impairment, competence and decisional capacity
  • Identify research participants who might have impaired decision making capacity
  • Describe assessments of decision making capacity
  • Evaluate the conduct of research in participants with impaired decision-making capacity
  • Describe types of consent applicable to research participants with impaired decision making capacity
  • Explain how Institutional Research Board and researchers could protect research participants with impaired decision-making capacity

Who is the course for?

This course is for researchers and members of the Institution Review Board / Research Ethics committee who wish to broaden their knowledge and understanding of ethical research on people with impaired decision-making capacity.

Who will you learn with?

I am a rehabilitation physician from Faculty of Medicine, Universiti Malaya. I coordinate the Masters of Health Research Ethics (MOHRE) programme.

Who developed the course?

Universiti Malaya

Universiti Malaya is the premier research university in Malaysia, committed to advancing knowledge and learning through quality research and education for the nation and for humanity.

  • Established

  • Location

    Kuala Lumpur, Malaysia
  • World ranking

    Top 60Source: QS World University Rankings 2021

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