1. Week 5: Ethical, Legal & Social Issues in Applied Genomics

2. Outline of Lecture 1
A case study. This is a primer and a typical clinical scenario. It gives us an opportunity to start reflecting on day to day ethical challenges we face in the clinic or research
An introduction to basic ethical principles and their application in nursing practice and health research.

3. Outline of Lecture 1: Session 1
Ethics
Norms for conduct that distinguish between acceptable and unacceptable behavior.
philosophical ideals of right or wrong behavior.

4. Outline of Lecture 1: Session 1
Bioethics: Study of ethical, legal and social Issues (ELSI) that arise in biomedicine and biomedical research:
medical ethics-focuses on issues in health care
research ethics- focuses on issues in the conduct of research
public health ethics-addresses ethical issues in public health.

5. Ethical Theories Ethics is based on two broad philosophical theories
consequentialism – taking the consequences of our actions into consideration
deontology – basing our actions on a set of principles or duties

6. Consequentialism
Actions are right or wrong according to the balance of their good and bad consequences
the right act is the one that produces the best overall result

7. Consequentialism
Utilitarianism (what action has the greatest utility - use/benefit/positive outcome) is a type of consequence- based theory
actions ought to produce the maximal balance of positive value (e.g. happiness) over disvalue (e.g. harm)

8. Deontology
Duty or principle based theory (an act is right if it conforms to an overriding moral duty
A moral duty or principle as laid down by God (religious books) or
supremely rational being in accordance with reason / rationality (NMC code of conduct)

9. Deontology
actions ought to produce the maximal balance of positive value (e.g. happiness) over disvalue (e.g. harm)

10. Fundamental Principles in Bioethics
Four main principles in Bioethics supplemented by 4 rules:
Autonomy
Beneficence
Maleficence
Justice

11. Fundamental Principles in Bioethics
Four ethical rules:
Veracity
Privacy
Confidentiality
Fidelity

12. Autonomy Respect for persons human dignity
Respect a person’s right to make their own decisions (choosing freely)

13. Autonomy Support people in their individual choices
Do not force or coerce people to do things
Core Application: Informed Consent process, Privacy and Confidentiality

14. Both Beneficence and Non-maleficence lies on the same side of a coin
Beneficence- Maximize benefits

15. Protect the rights of ‘vulnerable’ people and those in crisis
Beneficence
‘Benefit’ should be defined by the person themselves. It’s not what we think that is important.
Protect the rights of ‘vulnerable’ people and those in crisis

16. Non-Maleficence- do not to inflict harm/pain or suffering on people
Core Application
Appropriate Risk-Benefit Ratio, Privacy, Coercion

17. Justice Treating people fairly
Acting in a non–discriminatory / non-prejudicial way
Fairness in the distribution of benefits and burdens of research

18. Justice Core Application Access to essential medicines or healthcare
Equitable selection of research participants(randomly without bias)

19. Four ethical rules
Veracity – truth telling, informed consent, respect for autonomy
Privacy – a persons right to remain private, to not disclose information

20. Four ethical rules
Confidentiality – only sharing private information on a ‘need to know basis’
Fidelity – loyalty, maintaining the duty to care for all no matter who they are or what they may have done

21. Reading Assignment Reading Assignment
Read the more on Ethical theories and principles in the following books:
Beauchamp T and Childress J (2001) Principles of Biomedical Ethics 5th Edition Oxford University Press
Hunt G (1994) Ethical Issues in Nursing Routledge. London