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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 —
  1. Provide users with reasonable notice of our information practices, including disclosure of —
    1. collection or use of any information about the user;
    2. collection or use of aggregate data; and
    3. what, if any, access to personal information collected on our health web site we provide to unrelated third parties.
  2. 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.
    3.  
  3. Contain a positive commitment from us to use security procedures to protect personal information we collect from misuse.
    4.  
  4. 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.
    5.  
2.         Enhanced Privacy Protection for Health-Related Personal Information

  1. 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. 
  2. 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)
    3. . 
  3. 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

  1. 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.
    2.  
  2. 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
    3. . 
  3. 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.
  4. 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:
  1. Clearly state who owns any health web site we operate.
  2. 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

  1. 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.
  2. We will clearly disclose significant relationships between commercial sponsors and our health information content by identifying a sponsor’s involvement in —
    1. 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
    2. any "co-branding" of health information content or Internet health services.
  3. 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 —
    1. how we identify advertising and commercially sponsored health information content on our health web site;
    2. 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;
    3. 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
    4. 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
      5. .
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

  1. We will not make claims of therapeutic benefit without reasonable support, or deliberately provide false or misleading information.
  2. 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.
  3. 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
  1. 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.
  2. 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.
    3.  
  3. 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.
    4.  
  4. 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. 
  5. Where we create health information content, we will clearly disclose the date it was created or last updated.
  6. 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

  1. Where we offer self-assessment tools, we will disclose their source and appropriately describe the scientific basis for their operation. 
  2. 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.
    3.  
10.       Professionalism

  1. 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.
  2. 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.
  3. Internet health services directed to and for use by health care professionals are beyond the scope of these principles.
11.       Qualifications

  1. 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.
  2. 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

  1. 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. 
  2. 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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