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

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.

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

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.

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

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

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)

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)

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

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

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

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

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

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

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

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

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

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

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

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

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