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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. Truth and Health Promotion. - PowerPoint PPT Presentation
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Ethical Issues in Health Research in Developing Countries
November 10, 2004
Ethics, E-Health, and Ethics, E-Health, and World GovernanceWorld Governance
Daniel Wikler, Ph.D.
Harvard School of Public Health
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
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
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
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
“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
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
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
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
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
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
.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
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
.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
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
For further information
Dr Joan Dzenowagis Project Manager, Health InterNetwork e-Health World Health Organization 20 Ave Appia CH-1211 Geneva 27 Switzerland
tel. +41 (22) 791-2504 fax +41 (22) 791-4292 eMail [email protected]
