1. UCL INSTITUTE OF NEUROLOGY DCEE Ethics in Epilepsy Ley Sander MD PhD FRCP Department of Clinical and Experimental Epilepsy UCL Institute of Neurology, Queen Square, London and SEIN – Epilepsy Institute in the Netherlands Foundation Heemstede, the Netherlands

2. UCL INSTITUTE OF NEUROLOGY DCEE UCL INSTITUTE OF NEUROLOGY DCEE Epilepsy and Ethics Care and Health Care are basic human rights All individual and entities have a duty of care in their dealing with other and with the environment To exercise reasonable care with respect to the interests of others, including protecting them from harm

3. UCL INSTITUTE OF NEUROLOGY DCEE UCL INSTITUTE OF NEUROLOGY DCEE Differing aspects of epilepsy Seizures – not there most of the time! –Frequency & severity, unpredictability, safety Physical –Impairment of function, mobility, morbidity, co-morbidity Emotional and behavioural –Depression, anxiety, adjustment to circumstances Social and family functioning –Relationships, dependence, family, leisure Cognitive and academic –Schooling, employment, aspirations, expectations

4. UCL INSTITUTE OF NEUROLOGY DCEE UCL INSTITUTE OF NEUROLOGY DCEE Ethics: The Sciences of morality In Philosophy, ethical behavior is that which is “good" or “right" Concepts such as "good“, "bad“, "right“, "wrong“, "moral“, "immoral” But these concept may have very different meaning for different people!

5. UCL INSTITUTE OF NEUROLOGY DCEE UCL INSTITUTE OF NEUROLOGY DCEE Ethics: The Sciences of morality In Philosophy, ethical behavior is that which is “good" or “right" Concepts such as "good“, "bad“, "right“, "wrong“, "moral“, "immoral” But these concept may have very different meaning for different people! Ethically duty of care needs to be exercised properly and impartially

6. UCL INSTITUTE OF NEUROLOGY DCEE UCL INSTITUTE OF NEUROLOGY DCEE Ethics: Set of moral values that govern interactions of oneself with others, with society and with surroundings encompassing all spheres Concerns duties, obligations, and taking the right actions in dealing with others –Duty of care Values, priorities, and morals

7. UCL INSTITUTE OF NEUROLOGY DCEE UCL INSTITUTE OF NEUROLOGY DCEE Ethics in Epilepsy Multi-faceted condition which affects many domains of people’s life As such many aspects to ethics in epilepsy Involve relations between people with epilepsy and their carers, family, peer group, health providers, and society as a whole

8. UCL INSTITUTE OF NEUROLOGY DCEE UCL INSTITUTE OF NEUROLOGY DCEE Differing Aspects of Ethics in Epilepsy Clinical Work Care Research Disclosure Code of Ethics Conflict of Interests Treatment Gap

9. UCL INSTITUTE OF NEUROLOGY DCEE UCL INSTITUTE OF NEUROLOGY DCEE Clinical Work Treatment choices Decision to treat or not to treat People with learning disabilities Consent and assent Treatment procedures Investigations Emergency care Terminal care

10. UCL INSTITUTE OF NEUROLOGY DCEE UCL INSTITUTE OF NEUROLOGY DCEE Care Decision making Emergency treatment Calling emergency services Taking to hospital People with learning disabilities Choices Placement Treatment Participation in research Contraception Right to privacy

11. UCL INSTITUTE OF NEUROLOGY DCEE UCL INSTITUTE OF NEUROLOGY DCEE Research Work I Detailed study of a subject or issue to discover new information or reach new understanding Must provide benefit Should not harm Not all “research” is research service evaluation audit

12. UCL INSTITUTE OF NEUROLOGY DCEE UCL INSTITUTE OF NEUROLOGY DCEE Research Work II Valid research question Appropriate methodology Well described Reproducible Ethically approved Dissemination of results

13. UCL INSTITUTE OF NEUROLOGY DCEE UCL INSTITUTE OF NEUROLOGY DCEE Research Work III Degree of information for consent Excluding certain groups from research Woman in childbearing age Woman who are pregnant People with learning disability People with certain family histories People with certain co-morbidities People with previous histories of specific reactions People with Learning Disability Participation in research Assent or consent

14. UCL INSTITUTE OF NEUROLOGY DCEE UCL INSTITUTE OF NEUROLOGY DCEE Research Work II Scientific integrity Fraud and misconduct Making up data “Cooking the books” Plagiarism Sloppiness Cutting corners Carelessness Plagiarism Animals rights

15. UCL INSTITUTE OF NEUROLOGY DCEE UCL INSTITUTE OF NEUROLOGY DCEE Disclosure Right to privacy Right to confidentiality Disclosure of medical information Balancing confidentiality against public interest Pilots, drivers, soldiers, bus/train driver with epilepsy

16. UCL INSTITUTE OF NEUROLOGY DCEE UCL INSTITUTE OF NEUROLOGY DCEE Conflict of Interest When someone has more than one interest in an issue when impartiality is a must Dealing with Conflict of Interest Removal Recusal Disclosure Ethical Code

17. UCL INSTITUTE OF NEUROLOGY DCEE UCL INSTITUTE OF NEUROLOGY DCEE Ethical Code Better think of the issues ahead Code of Ethics (institutional, corporate, business) Sets out general principles on organization's beliefs Assists making decisions involving 'right' and 'wrong' concepts Code of Conduct (employees ethics) Code of Practice (professional ethics)

18. UCL INSTITUTE OF NEUROLOGY DCEE UCL INSTITUTE OF NEUROLOGY DCEE Epilepsy in resource poor settings Most people with epilepsy in LAMIC Usually low health budget Less than US$ 10/year per capita Chronic diseases not a priority Inoculations, infectious diseases, child health Very high treatment gap High Burden

19. UCL INSTITUTE OF NEUROLOGY DCEE UCL INSTITUTE OF NEUROLOGY DCEE Epilepsy in resource poor settings Is it ethical for LAMIC to channel limited resources from direct epilepsy care to research? In a country with limited resources, when does ignoring the high treatment gap become an ethical issue? Do countries with plentiful resources have an ethical responsibility to help relieve the high epilepsy treatment gap of poor countries? Tan & Avanizini. Epilepsia 2009

20. UCL INSTITUTE OF NEUROLOGY DCEE UCL INSTITUTE OF NEUROLOGY DCEE Epilepsy and Ethics: conclusions Differing aspects of both epilepsy and ethics Best interest of other paramount in care Proactive in identifying issues that may raise questions Need for Ethical Codes Ethics, not law or being professional, should provide the ultimate guidance for what we do The law of least effort should never apply!