Ethical Issues in Health Research in Developing Countries

1. Ethics, E-Health, and World Governance Ethical Issues in Health Research in Developing Countries Daniel Wikler, Ph.D. Harvard School of Public Health November 10, 2004

2. Truth and Health Promotion • Standards for truthfulness and informed consent in clinical medicine are not directly applicable to health promotion and public health • A doctor exclusively concerned with the individual patient • A patient intent on obtaining health information from the doctor • A legal framework conferring rights to information • Source: Dr. Leonard Glantz

3. Truthfulness in Health Promotion • Providing information in the context of public health lacks these advantages • Public health information is provided without specific knowledge of individual circumstances • Some consumers must be induced to give their attention the message • The lack of a doctor-patient relationship prevents the producer of information to ensure that it is properly understood • Source: Dr. Leonard Glantz

4. Truthfulness and E-Health • The internet has huge potential as a source of health information • Wide variety of sources of information • Multiple opinions can be obtained • Information is often free • Consumers can remain anonymous • Search engines find information on individual, specific problems

5. Truthfulness and E-Health • But the internet is a potential minefield for consumers of health information • Consumers may not be able to distinguish information, misinformation, and disinformation • Lack of a legal framework hinders accountability and compensation • The potential of E-health for health promotion may be undermined if consumers lose trust

6. “We don’t have any control over the Internet. If something goes down, you don’t even know who’s accountable. The Internet is, like, ‘Who ya gonna call?’” • Bud Michaels, President and CEO of CSP, Inc. • quoted in LA Times, July 2001 • Source: Joan Dzenowagis, Ph.D., WHO

7. Quality of information on Health Internet • Health is being redefined by a medium not subject to geographic borders • Many groups struggling to set standards for health on the Internet: industry, consumers, governments, professionals • Need for real guidance and effective mechanisms for health Internet conduct and practice • Dual challenge of growth vs protection: essential to support the free flow of health information worldwide, yet protect citizens from harm. • Source: Joan Dzenowagis, Ph.D., WHO

8. WHO’s position • Health information quality is too important to be left to market forces alone. WHO’s response: • Prevention of harm is laudable and viable through the creation of a new top-level domain. • Source: Joan Dzenowagis, Ph.D., WHO

9. WHO and .health • WHO strategy and plan • International consultation process • Standards review • Responsibility and resources • Operational procedures for administering .health • ICANN approval and negotiation • Source: Joan Dzenowagis, Ph.D., WHO

10. Internet top-level domains • Domain name system • Introduced in 1980s to handle growing Internet • Administered by ICANN, private sector non-profit corporation in USA • Organizes Internet by name (previously by number) • Uses hierarchical structure: names separated by dots • Top-level domain follows last dot: .com, .edu, .int • Each top-level domain managed by single organization. • Source: Joan Dzenowagis, Ph.D., WHO

11. New top-level domains • Creation of new names • First time since mid-1980s • Careful process to keep domain name system stable • ICANN process (October - December 2000) • Application to ICANN • Public comments period and technical review • Selection of names and negotiation of terms • WHO has proposed that .health be created as a sponsored, restricted top-level domain. • Source: Joan Dzenowagis, Ph.D., WHO

12. .health: A new top-level domain • Aims: • Establish an easily-recognized label for trustworthy health information • Coordinate and harmonize efforts to improve health information on the Internet • International quality and ethical standards • NOT an attempt at regulation • Addresses key shortcoming of self-regulation in that it is enforceable: domain name can be suspended or cancelled for non-compliance. • Source: Joan Dzenowagis, Ph.D., WHO

13. The World Health Organization • Uniquely positioned to provide neutral, international support for .health: • Specialized United Nations agency with a charter for international health • Worldwide representation: 191 member states, 130 of these are developing nations • 50 years’ experience in standards setting • Ability to draw on a well-established, international process for bringing together countries and actors at every level. • Source: Joan Dzenowagis, Ph.D., WHO

14. .health: Guiding principles • In keeping with the framework of WHO: • Work within established international consensus process • Representation and inclusiveness: national and international partners, public and private sectors • High standards for equity, transparency, ethics • Commitment to development through health

15. Outcome of ICANN process • .health not among initial 7 names selected: ICANN priority to relieve pressure on commercial domain name space; seeking names ready to implement • International awareness and interest: press, public and professionals • Many stakeholders have emerged • Standards development and regulation debated • ICANN process questioned • Applications held for next round • Source: Joan Dzenowagis, Ph.D., WHO

16. For further information • Dr Joan DzenowagisProject Manager, Health InterNetworke-HealthWorld Health Organization20 Ave AppiaCH-1211 Geneva 27Switzerland • tel.      +41 (22) 791-2504fax     +41 (22) 791-4292eMail  dzenowagisj@who.int