1. Ethical Dilemmas for E- Health David Zitner Director Medical Informatics Dalhousie University Kimberly Tomasson Ethicist, University of Victoria

2. E-Health Benefits or ethical morass? “Holding the promise of beneficence, information technologies are purported to increase access, improve quality, and decrease the costs of care. Aspects of these technologies, however, create conflicts with the ethical principles of autonomy, fidelity, and justice.”

3. Apparent Ethical Dilemmas Impede Progress! Framing ethical dilemmas differently leads to different conclusions An understanding of the various ways to frame ethical dilemmas helps resolve them, and surprisingly will increase the speed of adoption of worthwhile information technology

4. E-Health Holds Promise for Good Barriers Barriers –Privacy –Security –Deontological views Personal Information is a public good for public benefit? Personal Information is a public good for public benefit? –Utilitarian Appropriate personal information is a public good for public benefit? Appropriate personal information is a public good for public benefit?

5. Developing a Course for Technically Advanced HI Students When does attending to a particular ethical value produce a result which is bizarre, or inappropriate or fails to meet needs of one or another constituency? When does attending to a particular ethical value produce a result which is bizarre, or inappropriate or fails to meet needs of one or another constituency?

6. Perspectives Utilitarian orientations focus on trying to achieve the greatest amount of good for the greatest number of people Utilitarian orientations focus on trying to achieve the greatest amount of good for the greatest number of people Deontological perspectives view ethical issues from a right-duty perspective and attempt to resolve moral conflict by balancing competing interests. (Tommason, U.Vic) Deontological perspectives view ethical issues from a right-duty perspective and attempt to resolve moral conflict by balancing competing interests. (Tommason, U.Vic) Sometimes these views conflict Sometimes these views conflict

7. Failing to address ethical conflict leads to paralysis Caring for patients vs. caring for community-Informed consent! Caring for patients vs. caring for community-Informed consent! Are duties to individual patient or to community? What information should be aggregated? Should we defer implementing EMR’s because some are fearful that the information will be misused? Is the question philosophical (deontological) or empirical (utilitarian) Are duties to individual patient or to community? What information should be aggregated? Should we defer implementing EMR’s because some are fearful that the information will be misused? Is the question philosophical (deontological) or empirical (utilitarian)

8. Dilemmas and Predicaments Parentalism vs. Autonomy Parentalism vs. Autonomy Adequate information about Adequate information about –Access and results can lead to anxiety –Access and results is necessary for personal choice.

9. Public Health Issues Disease surveillance Disease surveillance Health Promotion Health Promotion Treating predilictions Treating predilictions –Certain information will benefit some and clearly harm others

10. Constituency Views Where is the Obligation? Public Public Patients Patients Health Services Administrators Health Services Administrators –Provider Organizations Policy Makers Policy Makers Providers Providers

11. Sometimes doing “right” doesn’t seem to fit with a utilitarian model –$300,000 for Fabry’s Disease Insurance cost = $6.00/year per person if 20 people in Nova Scotia need the drug Insurance cost = $6.00/year per person if 20 people in Nova Scotia need the drug –The cost of paying for this represents only a small fraction of N.S. drug costs per person $6/$457.56 = 1.3% $6/$457.56 = 1.3%

12. Should we pay for expensive drugs if they are useful? Cost of covering Fabry’s disease represents only 1.3% of total drug costs (possibly less). Cost of covering Fabry’s disease represents only 1.3% of total drug costs (possibly less). Is this compatible therefore with both a deontological model and a utilitarian model? Is this compatible therefore with both a deontological model and a utilitarian model?

13. Looking for Scarcity but Finding abundance? –1993-1998 12% increase in spending on antidepressants yet some drug manufacturer’s state the drugs aren’t effective. –How IT and Tracking will help us build on abundance.

14. Contemporary Issues Line ups- few for things we all can normally afford Line ups- few for things we all can normally afford Longer for expensive procedures Longer for expensive procedures Payment issues Payment issues –Is there a benefit to beneficiaries of medicare contributing when they receive service (As Tommy Douglas, Romanow and Kirby all suggest). How? –Or is health care a “right” which everyone must get free of cost regardless of consequences on other community spending. What if this means we are all subject to illegible scrawls on scraps of paper? What if this means we are all subject to illegible scrawls on scraps of paper?

15. Health care cooperatives (user pay) to adopt technology Will cooperatives lead to tears about tiers? Will cooperatives lead to tears about tiers? Should people be able to pay for technologies that governments only provide to selected practices? Should people be able to pay for technologies that governments only provide to selected practices?

16. Privacy vs. Informed Consent People have a right to privacy People have a right to privacy People also have a right to receive the information they need for informed consent People also have a right to receive the information they need for informed consent Conflict between access to information needed for informed consent, and ability to prevent others from gaining access to personal information needed for aggregation Conflict between access to information needed for informed consent, and ability to prevent others from gaining access to personal information needed for aggregation

17. Privacy vs. Informed Consent Deontological Deontological –Responsibility of all to share for public good Utilitarian Utilitarian –Everyone benefits if information about the results of care are readily available THEREFORE, Information gathered for one purpose should be available for use for other purposes with appropriate safeguards for confidentiality. THEREFORE, Information gathered for one purpose should be available for use for other purposes with appropriate safeguards for confidentiality.

18. Benevolent Deception? Percival Med Ethics 1847 Deontological Deontological –Absolute duty to tell the truth Utilitarian Utilitarian –“Boy who cried wolf” Both perspectives produce same result. Clinicians should never deceive patients. Both perspectives produce same result. Clinicians should never deceive patients.

19. Ethical dilemma 1 Home Care ( Xiamin Lou) What should caregivers do when there is conflict with patient’s autonomy (self- determination, advance directives) and beneficence? What should caregivers do when there is conflict with patient’s autonomy (self- determination, advance directives) and beneficence? For most common instance: On one hand, patients may refuse treatment even though it is reasonable and would be beneficial; on the other hand, patients and families may demand services that are not required or maybe harmful to them. For most common instance: On one hand, patients may refuse treatment even though it is reasonable and would be beneficial; on the other hand, patients and families may demand services that are not required or maybe harmful to them.

20. Dilemmas and Predicaments Solutions? Is this an appropriate discourse for informatics students? What if there are no clear solutions does that mean that anything goes? Or do we become paralyzed? Are there choice rules based on deontology? On utilitarian principles? COMMENTS?

21. Kimberly Tomasson An ethical experts approach An ethical experts approach Panel discussion and audience participation Panel discussion and audience participation How do we ethically overcome apparent barriers to progress? How do we ethically overcome apparent barriers to progress? Are we doomed? Are we doomed?