Module 2: Lesson 5 – Ethical, Legal & Social Issues in Applied Genomics

Trainers

Name: Mrs Adeyinka Ishola
Affiliation: University of Ibadan
Location: Ibadan, Nigeria

Adeyinka Ishola is an advanced mental health nursing specialist and a bioethicist. She received both her bachelor’s degree in nursing and master’s degree in psychiatric and mental health nursing from the University of Ibadan. Had a second master’s degree in Bioethics and currently on a doctoral nursing program in mental health nursing at the University of Western Cape, Cape-town. South Africa. As a nurse clinician, she worked at the University College Hospital, Ibadan for many years; which equipped her with the necessary skills needed in clinical practice. As a nurse educator, She started her academic career at the School of Nursing, University College Hospital, Ibadan in 2001 teaching and providing guidance to student nurses. She joined the Department of Nursing, University of Ibadan as a faculty in 2011. Her research interests lie in finding solutions significant gaps in mental health knowledge and identifying ways to promote people’s health and well-being. Her researches had focused on providing mental health support for people experiencing life stressors. Adeyinka has a passion for working with marginalized and less privileged population. Adeyinka is a dynamic fellow of the West African College of Nursing and Honor Society of Nursing, Sigma Theta Tau International. She is member of the Public responsibility in Medicine & Research, Boston, U.S.A and African Organisation for Research and Training in Cancer. She is enthusiastic in taking you through the art and science of ethics and mental health nursing in your nursing career.

Name: Nchangwi Syntia Munung
Affiliation: University of Cape Town
Location: Cape Town, South Africa

Nchangwi is currently a student at the University of Cape Town, South Africa.  She is exploring issues around governance of  global health research consortia, focussing on genomics research and biobanking in Africa.

Summary
In this session, we aim to provide nurses with basic knowledge of ethical principles and theories and their application in nursing practice and research, with a focus on genetics and genomics related issues in Africa. The course is expected to equip nurses with an understanding of key ethical issues in genomics and to be able to anticipate and address these ethical issues during clinical practice and research.

Learning Outcomes

  • List key ethics principles and how these might apply in practice and research
  • Highlight the importance of genomics research and biobanking for health care and research
  • List some key ethical issues in genomics research and biobanking
  • List key components of informed consent in genomics research and biobanking
  • Describe the use of broad consent for genomics and biobanking
  • State importance of confidentiality and privacy in health practice and research
  • Reflect on their own beliefs and cultures and how these could impact their professional roles

Class Videos 

Module2_Lecture5_Video1_Ishola_Nchangwi

Module2_Lecture5_Video2_Ishola_Nchangwi

Class Slides

Module2_Lecture5_Slide1_Ishola_Nchangwi

Module2_Lecture5_Slide2_Ishola_Nchangwi

Class Assessment: Pre-Class Exercise

Question 1: Ethics of Genetic Testing

Video (Credit CNN)

Article (Credit IOL)

List ethical questions and cultural concerns that might arise from conducting such genetic testing for your community? (Paste/Write thoughts onto Vula – preclass discussion board).

Question 2: Consent and Benefits
Video (Credit Ted-ED)
Article (Credit NY Times)

How do you think the researchers should have obtained consent from Henrietta?
How could genomics researchers get consent  to use  samples and data of deceased individuals? What ethical, social and/or cultural issues may arise when genetic studies is carried out using samples/data from deceased individuals for which informed consent had not been previously obtained

Question 3: Introduction to Biobanking.
Video (Credit Stellenbosch Faculty of Medicine & Health Sciences)

What ethical or cultural issues might be raised by your communities around the concept of biobanking?

Question 4: Extra Video & Readings (Case study – Tuskegee Syphillis Experiment)
Video (Credit Vlogs of Knowledge)

Article (Credit Centers for Disease Control & Prevention)

Any reflections on the nurses’ role in the Tuskegee Syphillis Experiment?

Assessments: Class Exercises

Mr and Mrs Zama are referred for genetic counselling as Mrs Zama’s father has severe haemophilia A. The couple has been married for 3 years and is planning a pregnancy. Mrs Zama said the family does not discuss haemophilia and no testing has been performed. No-one knows they are attending the clinic. She does not want to have a child with the condition. It seems Mr Zama had less strong views and desperately wants children.

Not sure what haemophilia is or how it is inherited? : Search for information at the Genetics Home Reference described in last week’s lecture Click here to search
Interested to know about haemophilia in Africa: Click here to read an article

Question 1: For the Case study above, how do you think a nurse’s personal beliefs and cultures could affect the response or recommendations they could give the couple around termination of pregnancy or any other advise? What ethical decision making approaches could the nurse be guided by in responding/giving information to the couple? (2 marks)

Question 2: Pick a genetic disease of your choice and a research study of your choice. Describe this study briefly. What key elements should be included in the consent form? Develop a draft consent form for such a study, with the key elements as subheadings and include brief text you would read out to the participant under each subheading (8 marks)

Class Evaluation
See course evaluations section.

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