Online social networks have potential to change the nature, speed, and scope of public health surveillance and research by offering a real-time stream of user-generated updates from millions of people around the world. In recent years, systems using informal data mined from social media sources have been credited with reducing the time it takes to detect an emerging outbreak, preventing governments from suppressing outbreak information, facilitating public health responses, and contributing to health risk behavior research in a quick and cost-efficient manner.

Despite the inherent public nature of social media, there are many ethical implications inherent in the systematic acquisition of personal information, especially that pertaining to health. Concerns surrounding social network data analysis include issues of privacy, data quality, public panic, autonomy, access, and informed consent. While online social network data analysis holds great promise, it is essential that this valuable data be systematically harnessed in compliance with the law and ethical principles to yield population-level health benefits.

Privacy Concerns

Advancements in information and communication technologies distort the boundaries between what is public and what is private. Users of online social networks often share identifiable information about themselves, including their full names, birthdates, email addresses, GPS coordinates, and job titles. By providing researchers with rich, ready-made data sets, social media is incentivizing researchers to develop innovative methods to search the Internet for health-related information. The mining and mapping of social networks have become a common practice, from market research to medical studies. However, it is important then to consider what obligations researchers and public health officials have in meeting their online subjects’ expectations of privacy.

The Code of Federal Regulations governing human subject research, 45 C.F.R. § 46.102, defines private information as individually identifiable information about behavior “that occurs in a context in which an individual can reasonably expect that no observation or recording is taking place, and information which has been provided for specific purposes by an individual and which the individual can reasonably expect will not be made public.”

While mining publicly available data from open sources is within the letter of the law, it raises a number of ethical issues. Some might argue it seems unreasonable that a public posting on a public site can hold an expectation of privacy. However, privacy can conceptually be considered to be an individual’s right to determine what information one would like to share with others and the ability to control when others can access that information. While the practice of data mining is growing, many social media users are unaware of how public their data truly is.

Researchers must take into consideration the level of sensitivity of the information detected, such as stigmatized health conditions. Recent studies have shown that the Internet is used more often to get health information by patients with stigmatized conditions, such as mental disorders and sexually transmitted diseases.  The misuse of such data collected from the Internet by researchers can lead to stigma, discrimination, and discomfort of the subject. With no national standard, researchers and bioethicists are left to grapple with the issue of determining what situations render it permissible to turn unsuspecting individuals into a research subjects without notification or informed consent. Historically, advancements in bioethics standards have been reactionary to human subject abuses. It is vital to resist this reactionary approach to the lack of oversight in internet research and take a proactive stance to develop acceptable standard operating procedures for the use of big data sets culled from online social network websites before foreseeable abuses occur.

Conclusion

Privacy concerns notwithstanding, the potential societal benefit of digital epidemiology remains clear. The use of social media has the capacity to transform disease surveillance and change how healthcare workers respond to public health emergencies. As public health threats become increasingly complex, trade-offs must be made to ensure the collective benefits of population health warrant infringement on individual rights, while balancing competing ethical, health, economic, and legal concerns. Public health researchers must work together with policy makers, medical professionals, and bioethicists to develop unambiguous ethical guidelines to answer to challenges stemming from today’s technological advances and changing communications structure.

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