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Health Internet Ethics:
Ethical Principles For offering
Internet Health Services to Consumers
As Hi-Ethics
members, we are committed to ensuring that individual consumers can realize the
full benefits of the Internet to improve their health and that of their
families. To fulfill our commitment, we are dedicated to meeting the following
goals:
- Internet health services that reflect high quality and ethical standards;
- Providing health information that is trustworthy and up-to-date;
- Clearly identifying online advertising and disclosing sponsorships or
other financial relationships that significantly affect our content or
services;
- Keeping personal information private and secure, and employing special
precautions for any personal health information; and
- Empowering consumers to distinguish online health services that follow our
principles from those that do not.
We believe that in living by these principles, we can improve the consumer’s
experience with online health information and services. We have provided a
glossary of terms with special meanings at the end of this document.
1. Privacy
Policies
Our members will adopt a privacy policy that is easy for
consumers to find, read, and understand. Our privacy policies will —
- Provide users with reasonable notice of our information practices,
including disclosure of —
- collection or use of any information about the user;
- collection or use of aggregate data; and
- what, if any, access to personal information collected on our health web
site we provide to unrelated third parties.
- Provide consumers with a meaningful choice on our health web site to
accept or decline our proposed collection and use of personal information
provided by the consumer including, if any, consent to the transfer of
information to third parties.
- Contain a positive commitment from us to use security procedures to
protect personal information we collect from misuse.
- Provide, where appropriate, procedures for consumers to review and correct
their personal information that we maintain, or to request that we delete the
information, and include a description of the effect of any changes on other
information about the user that we maintain.
2. Enhanced Privacy
Protection for Health-Related Personal Information
- If we collect health-related personal information, we will only use it for
the purposes for which a reasonable consumer would expect us to use it or as
agreed to by the consumer.
- We will not disclose health-related personal information to an unrelated
third party and/or for unrelated purposes without first obtaining the consent
of the consumer (by means of an explicit "opt-in" procedure).
- When we make significant changes to our privacy policies that affect the
use of the health-related personal information we collect, we will give notice
to our users. We will not make use of information we gathered from
individuals prior to a significant change in policy without first obtaining
their consent for any new uses. We may also make non-significant changes
to our privacy policies that will not affect our use of a consumer’s personal
information. We will post such changes on our health web site.
3. Safeguarding Consumer
Privacy in Relationships with Third Parties
- Where third parties have access to health-related personal information
from our site, our agreements with these third parties will follow these
principles in giving consumers notice and choice with respect to that third
party’s access and use.
- Where we have relationships with third parties, we will adopt procedures
to tell consumers if third parties have access to personal information about
them from our site.
- We will take appropriate precautions to prevent inadvertent disclosures of
personal information to third parties and will take immediate steps to
eliminate such disclosures, if they occur, once they have come to our
attention.
- We will not allow third parties any access to non-personal individual
information collected on our site unless the third party agrees that it will
not use the information to identify individuals.
4. Disclosure of Ownership
and Financial Sponsorship
We
will disclose those who have major financial interests in us or the health web
sites we operate, and those who give us significant funding or other
assistance. We will:
- Clearly state who owns any health web site we operate.
- Clearly identify those who hold an ownership interest of 10% or more in
our company, and those whose financial contributions to our health web site
represent 10% or more of the annual revenues of our company. Financial
contributions mean both cash and in-kind services or materials by persons who
are not otherwise identified as sponsors.
5. Identifying Advertising
and Health Information Content Sponsored by Third Parties
- We will clearly distinguish advertising from health information content,
using identifying words, design, or placement. We will design our health
web sites to avoid confusion between advertising and health information
content.
- We will clearly disclose significant relationships between commercial
sponsors and our health information content by identifying a sponsor’s
involvement in —
- selecting or preparing health information content that appears on our
health web site, including any sponsorship of priority listings in search
engine results, product listings, or other preferences in presentation of
information to consumers; and
- any "co-branding" of health information content or Internet health
services.
- We will provide consumers with a policy that is easy for consumers to
find, read and understand regarding our acceptance of advertising and of
health information content sponsored by others. Our policy will disclose
—
- how we identify advertising and commercially sponsored health
information content on our health web site;
- how we may obtain revenues from third parties related to advertising and
health information content sponsored by others on our health web site,
including advertising revenues, commissions on consumer purchases, fees
based on consumer use of links to other web sites, and revenues for transfer
or use of information about users, including aggregate data;
- whether we target advertising or sponsored health information content to
consumers based on information about them or their use of our health web
site; and
- whether we intend any links to other web sites, logos, or marks of other
companies, or any co-branding to constitute recommendations to the consumer.
6. Promotional Offers,
Rebates, and Free Items or Services
We
will comply with existing federal and state laws regarding any promotions,
rebates, or free or discounted offers on our health web site.
7. Quality of Health
Information Content
- We will not make claims of therapeutic benefit without reasonable support,
or deliberately provide false or misleading information.
- We will not accept advertising or sponsored health information content
that we know either contains false or misleading claims or promotes
ineffective or dangerous products.
- We will have an editorial policy that is easy for consumers to find, read,
and understand. Our editorial policy will describe procedures we use for
evaluating the quality of the health information content on our health web
site, whether created by us or obtained from others.
8. Authorship and
Accountability
- We will disclose any cases where we have placed health information content
on our health web site because of sponsorship or other support from a third
party. In addition to identifying the sponsor, we will clearly disclose
significant relationships between the commercial sponsor and our health
information content by identifying the sponsor’s involvement with that
content.
- Where we reproduce health information content created by third parties, we
will clearly disclose the author and/or source of the material and the date of
the material or its last update.
- Where we present health information content as the result of clinical
experience or scholarly research, we will clearly disclose the actual
author(s) of the health information content.
- Where we create health information content for use by consumers, we will
provide consumers general information about our authors and their
qualifications, our editorial policy, and, if any, our expert review
process.
- Where we create health information content, we will clearly disclose the
date it was created or last updated.
- We will have a conflict of interest policy for all authors that is easy
for consumers to find, read, and understand. We will disclose all
affiliations and financial relationships of authors consistent with our
policy.
9. Disclosure of Source
and Validation for Self-Assessment Tools
- Where we offer self-assessment tools, we will disclose their source and
appropriately describe the scientific basis for their operation.
- We will also describe how we maintain self-assessment tools, including a
description of any formal evaluation process and the date of the last review
or update.
10. Professionalism
- We believe that current codes of ethics apply when health care
professionals use health web sites to provide professional care.
However, these codes do not apply to every interaction between a consumer and
a professional. Our health web sites shall provide conspicuous and
appropriate information for consumers to understand when they are and are not
in an interaction with a health professional that is covered by the ethical
standards of the profession.
- Where we allow health care professionals to engage in professional care on
our health web sites, we will design Internet health services to enable health
care professionals to adhere to professional ethical principles in the online
environment. We will continue to evolve new standards of practice to
meet the changing expectations created by consumers' use of Internet health
services.
- Internet health services directed to and for use by health care
professionals are beyond the scope of these principles.
11. Qualifications
- We will provide the credentials and qualifications of persons responsible
for health care services delivered via our consumer health web site. If
applicable, we will also provide information about professional licensure.
- We will disclose whether we verify information regarding health care
professionals or others who provide services or information on our health web
site.
12. Transparency of Interactions,
Candor and Trustworthiness
- We will inform consumers who use our Internet health services of the
risks, responsibilities, and reasonable expectations associated with their use
of our services. We will make sure that this information is easy for
consumers to find, read, and understand.
- We will strive to make it apparent to consumers when they move within a
site or leave one site for another and when the move changes the risks,
responsibilities, and expectations associated with their activities.
13. Disclosure of Limitations
We
will advise consumers of any limitations of our health web site as a source of
health care services. In particular, we will state that online health
services and health information content cannot replace a health
professional-patient relationship, and that consumers should always consult with
a professional for diagnosis and treatment of their specific health problems.
14. Mechanism for Consumer
Feedback
We
will make it easy for consumers to provide us with feedback or complaints
concerning our health web sites.
* * *
Founding members of Hi-Ethics intend to implement these principles within six
months. Contracts with a third party and a health web site in effect when these
principles are adopted need not be amended if the health web site has a good
faith belief that the contract is in compliance with the Principles set forth
herein.
HI-ETHICS GLOSSARY
For purposes of the Hi-Ethics Principles--
- AGGREGATE DATA means personal information or non-personal individual
information collected from a group of users that has been processed so that it
can no longer be used to identify a single, unique individual.
- CO-BRANDING refers to the joint branding of a web page or section of a
consumer health web site between two or more corporate entities or
individuals. Co-branding may involve the joint operation of services, health
information content or products that appear on a consumer health web site.
- HEALTH INFORMATION CONTENT includes information to help consumers stay
well, prevent and manage disease, and make decisions related to health and
health care, including information for making decisions about health-related
products and health services. It may be in the form of data, text,
graphics, audio or video, and may involve special software or hardware and
programming enhancements that support interactivity. Health information
content includes both materials authored by third parties (whether scholarly
works by scientists and clinicians or interpretive articles prepared for
consumers) as well as materials created specifically for use on a health web
site.
- HEALTH-RELATED PERSONAL INFORMATION refers to personal information that is
associated with health issues, categories, questions, and facts obtained as a
result of the individual's responses and activities on a health web
site.
- INTERNET HEALTH SERVICES means the full range of services and activities
available on a consumer health web site. Examples include the sale of
health care products, delivery of health care services and health information,
specialized health information searches, self-assessment tools and activities,
bulletin boards, chat rooms with and without participation by health
professionals, and opportunities for relationships and communication with
health care professionals and health plans.
- NON-PERSONAL INDIVIDUAL INFORMATION does not include any information that
would meet the definition of personal information (below), but may include
information about a specific individual's characteristics, preferences,
interests, experiences, and activities disclosed by the individual to the
health web site or obtained through the individual's use of the health web
site.
- OPERATE refers to the degree of control a corporation or individual has
over the operations of a consumer health web site. A corporation or
individual operates a consumer health web site if the corporation or
individual is primarily responsible for the material that appears on the site
including, but not limited to, advertising, health information content,
services and products.
- OPT-IN means an affirmative ability for a consumer to accept terms and
conditions.
- PERSONAL INFORMATION means any individually identifiable information about
an individual collected online, including a first and last name, a home or
other physical address, including street name and name of a city or town, an
E-mail address, a telephone number, a Social Security number, or any other
identifier that may permit the physical or online contacting of a specific
individual.
- SELF-ASSESSMENT TOOLS refers to online forms that allow an individual to
supply personal information and health-related information that cause
interactive software programming using medical knowledge to reach conclusions
that may be relevant to optimizing health care decisions or possible health
outcomes.
- UNRELATED THIRD PARTY refers to a corporate entity or individual who acts
on its own behalf and in its own interest and to carry out a purpose other
than that for which the individual accessed the consumer health web
site.
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