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Ethical, Legal and Social Issues in Applied Genomics

Module description

This module is available either via blended learning with contact days on-campus, or as fully distance learning via our online platform.

The module will provide you with a framework for ethical understanding of medical genomics. An ‘ethics in practice’ approach will be taken. You will be provided with a platform of ethical understanding from which to consider issues of confidentiality, autonomy, disclosure, informed consent and justice. You will consider the impact of genomic technologies on individuals, families, and demographic groupings. The social implications of genetic testing and screening will be considered, especially in the context of reproductive technologies. Finally, you will be provided with a legal framework for the use of genetic data for research, diagnostic and therapeutic purposes.

Module aims - intentions of the module

Many genomic tests have wider implications for the patient and their family, particularly where these may have a predictive aspect, provide incidental information, and/or have potential for being misleading or increase uncertainty. You will explore the ethical, legal and social implications (ELSI) involved in genomic testing and in specific integrated pathways.

Intended Learning Outcomes (ILOs)

ILO: Module-specific skills

On successfully completing the module you will be able to...

• 1. Defend the ethical principles of autonomy and justice/fairness and apply these to key practical issues such as confidentiality, disclosure and informed consent in scenarios within genomic medicine
• 2. Critically evaluate the challenges of emerging genomic technologies on society and societal values.
• 3. Analyse the current legal framework within which genomic medicine in practised in the UK
• 4. Critically appraise the impact of genetic databases on human autonomy, healthcare provision and discrimination.

ILO: Discipline-specific skills

On successfully completing the module you will be able to...

• 5. Identify clinical pathways in your own specialty or field of practice where the use of genomic investigation/techniques may be beneficial to patients, and be able to present a balanced view taking into account benefits and potential burdens
• 6. Critically evaluate the ethical, legal and social impact of genomic medical advances in a clinical pathway.

ILO: Personal and key skills

On successfully completing the module you will be able to...

• 7. Critically reflect on personal and professional practice and make connections between known and unknown areas, to allow for personal development, adaptation and change.
• 8. Respond to innovation and new technologies and be able to evaluate these in the context of best practice and the need for improved service delivery.
• 9. Communicate accurately and effectively a contemporary evidence base to relevant parties.

Syllabus plan

Whilst the module's precise content may vary from year to year, an example of an overall structure is as follows:

• ELSI issues for genomic medicine – confidentiality, autonomy, disclosure, informed consent,

natural justice.

• Effects of opportunistic predictive, incidental or variant of uncertain significance results.

• Impact of genomic testing on individuals, and demographic and ethnic differences.

• Social implications of genetic testing and screening, particularly in the context of human

reproduction.

• Legal aspects of genomic information in relation to diagnostic, therapeutic and research use,

and patenting of genomic information and tests.

• Obtaining ethical approval for research projects.

• Specific ELSI issues as applied to clinical pathways.

Learning activities and teaching methods (given in hours of study time)

Details of learning activities and teaching methods

Summative assessment (% of credit)

Details of summative assessment

Details of re-assessment (where required by referral or deferral)

Re-assessment notes

Please refer to the TQA section on Referral/Deferral: http://as.exeter.ac.uk/academic-policy-standards/tqa-manual/aph/consequenceoffailure/

Indicative learning resources - Basic reading

• Beauchamp, T. and Childress, J. (2008/2013). Principles of biomedical ethics. New York: Oxford University Press  (6^th or 7^th edition).

•  Hope, R. A., Savulescu, J., and Hendrick, J.  (2008) Medical ethics and law: the core curriculum. Elsevier Health Sciences. (2008)( 2^nd edition).

 ELE – http://vle.exeter.ac.uk/course/view.php?id=6146

Key words search

Confidentiality, autonomy, disclosure, informed consent, ethics, legal, ELSI