Ethical Issues in Health Research in Developing Countries

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

November 10, 2004
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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

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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

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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

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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

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• We dont have any control over the Internet. If
  something goes down, you dont even know whos
  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

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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

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WHOs position

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

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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

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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

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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

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.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

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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

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.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

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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

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For further information

• Dr Joan Dzenowagis Project Manager, Health
  InterNetwork e-Health World Health Organization
  20 Ave Appia CH-1211 Geneva 27 Switzerland
• tel.      [phone] fax     41 (22)
  791-4292 eMail  dzenowagisj_at_who.int