Professional Ethics Report (PER), which has been in publication since 1988, reports on news and events, programs and activities, and resources related to professional ethics issues, with a particular focus on those professions whose members are engaged in scientific research and its applications.
Each quarterly issue is comprised of a cover story addressing one particular issue or event, sometimes written by an expert outside the AAAS; a series of timely, in the news stories; brief updates from the societies; and useful resources and announcements.
PER was first published on the web in the Spring of 1995. Archives of Professional Ethics Report are available here.
Volume XXVI, Number 2, Spring 2013
In the News
- "Research Purity": An Attainable Goal?
- US Attorney: NYU Researchers Received Bribes, Concealed Affiliations
- Global Research Council Statement of Principles for Research Integrity
- British Libel Reform a Welcome, if Partial, Success
- Get Science Right: Canada's New Budget Causes Controversy in the Scientific Community
- Internet Research Guidance Issued by DHHS Advisory Committee
- Rebecca Carlson, Deputy Editor
- Terrell Brotherton, Contributing author
- Rachel Dlugash, Contributing author
- Mark Frankel, Editor
- Michael Lerner, Contributing author
- Amanda Shea, Contributing author
To Subscribe: To receive electronic versions of PER, please subscribe by filling out this form: http://listserv.aaas.org/mailman/listinfo/per.
This newsletter may be reproduced without permission as long as proper acknowledgement is given. ISSN: 1045-8808
Defining the Right to Benefit from Science: Purpose and Progress
Jessica Wyndham, J.D., is the Associate Director of the AAAS Scientific Responsibility, Human Rights and Law Program.
The lead article in the Fall 2009 issue of the Professional Ethics Report (PER) brought to this audience a human right that was largely unknown and wholly undefined, the right to "enjoy the benefits of scientific progress and its applications."  Four years later and it may appear on the surface that not much has changed. That, however, is not the case. A deeper investigation reveals important developments at the domestic and international levels as well as the recent engagement of key constituencies. Together, these elements have the potential to push the process forward of defining and applying the right to enjoy the benefits of scientific progress.
In 1948, the United Nations (UN) General Assembly adopted the first international instrument on human rights, the Universal Declaration of Human Rights (UDHR). Article 27 of the UDHR recognized for the first time a right to "share in scientific advancement and its benefits." A non-binding document, the UDHR gave rise to two binding covenants. It is Article 15 of the International Covenant on Economic, Social and Cultural Rights (1966) (ICESCR) that recognizes the right to "enjoy the benefits of scientific progress and its applications." Article 15 also recognizes the duty of governments to:
- Conserve, develop and diffuse science;
- Respect the freedom indispensable for scientific research; and
- Encourage international contacts and cooperation in science.
The significance of this right is potentially great: it is unique in embracing scientists and the scientific enterprise as subjects of specific human rights concern; it speaks to broad science literacy as an imperative underlying both individual autonomy as well as public participation in decision-making on issues related to science; it emphasizes the importance of international scientific cooperation both to strengthen scientific research as well as ensure sharing of knowledge, expertise, and products with resource-poor countries; and it underpins many other human rights that depend on science and technology to be fully realized.
Setting the Stage
Despite the potential significance of the right, for decades it remained neglected by the treaty-monitoring body responsible for its interpretation and implementation. As a result, the 160 countries that were legally bound to fulfill the right and report on their compliance with the right in accordance with their obligations under the treaty routinely failed to do so. It similarly received very limited attention from the human rights community and even less from the scientific and engineering communities.
In 2007, the situation began to change: the American Association for the Advancement of Science (AAAS) created a project aimed at engaging the US scientific community in the process of defining and implementing the right; and the UN Educational, Scientific and Cultural Organization (UNESCO) began a three-year process of conceptualizing the right, involving lawyers, ethicists, academics and some human rights practitioners.
By 2009, when the original PER article on this subject was written, there were just four principal points of consensus. First, realization of the right to enjoy the benefits of scientific progress and its applications is necessary for the fulfillment of several other rights. Second, the right also has meaning and value independent of other human rights. Third, the right requires governments to implement special measures necessary to address the needs of disadvantaged and marginalized groups. Finally, scientific freedom is an essential element of the right. The contours of the analysis at this point were very broad and the level of analysis quite shallow. In the intervening four years, that has changed.
Possibly the most important development of the past few years has been the active engagement of the scientific and engineering communities in the process of defining the right. In April 2010, the AAAS Board of Directors adopted a statement on the right to enjoy the benefits of scientific progress, recognizing the right as vital to the mission of the organization and undertaking to engage the scientific community in the process of defining the right with the goal of bringing the perspectives of scientists to the on-going UN process . The AAAS Science and Human Rights Coalition took up this challenge.
A multi-disciplinary network of scientific and engineering membership organizations that recognize a role for scientists and engineers in human rights, the Coalition undertook to gather the perspectives of its members and others on the meaning of the right to enjoy the benefits of scientific progress. Over the course of 18 months, the Coalition held 16 disciplinary-specific focus groups involving almost 150 individuals. The findings of this process will be presented to the UN later in 2013.
As the scientific community has become increasingly engaged in defining the right to benefit from scientific progress, the community of academics and practitioners concerned with intellectual property (IP), bioethics and access has started to incorporate this right into their discourse. A relatively large, active, vocal and strategically savvy community, often in the past experts in this field have shied away from tying their advocacy for greater access to claims to human rights, judging that recourse to human rights language is either strategically weak or too political. That has changed, as recent literature in the field reflects . As recently as June 25, 2013 a treaty granting blind persons access to published works was negotiated at the World Intellectual Property Organization . The second and third preambular paragraphs clearly reflect the language of the right to enjoy the benefits of scientific progress.
Affecting change at the international level is a less dynamic and markedly more gradual process than engaging other constituencies. However, in 2012 an important step was taken. The right to benefit from scientific progress was put firmly on the agenda of the UN Human Rights Council with the presentation by Farida Shaheed, Special Rapporteur in the field of cultural rights, of a report specifically on the right. This report represented the first time the right had been addressed by the Council and presented a valuable opportunity for moving forward our understanding of the right while identifying key questions remaining to be addressed.
Building existing literature and debate, the Special Rapporteur identified four core components of the right: access by everyone without discrimination to the benefits of science and its applications, including scientific knowledge; opportunities for all to contribute to the scientific enterprise and the freedom indispensable for scientific research; participation of individuals and communities in decision-making about science; and development of an enabling environment fostering the conservation, development and diffusion of science and technology.
As Audrey Chapman and I recently discussed in a Science article focused on the Special Rapporteur's report , several questions were raised that require further consideration: What kind of infrastructure and policies are required to implement the right? What means of outreach and education would best enable public engagement in decision-making about science and technology? What is the precise scope of the international community's responsibility to provide assistance and technology transfer to resource-poor countries? How can the balance between IP protections and the right be achieved? While we are still far from finding answers to these questions, that the discussion has begun and continues is essential.
A US Perspective
An unexpected participant in discussions about the meaning and application of the right to benefit from scientific progress has been key institutions in the United States (US). The US has not ratified the ICESCR and, therefore, is not legally bound by it. Yet, the human rights principles enshrined in the treaty and particularly the right to benefit from scientific progress have found their way into at least two recent statements concerning scientific research and technological development.
In December 2011, the Presidential Commission for the Study of Bioethical Issues presented its findings on the case involving the deliberate infection with sexually transmitted diseases of individuals in Guatemala. In its report, Moral Science: Protecting Participants in Human Subjects Research, the Commission made explicit reference to the ICESCR among other human rights instruments, emphasizing the need to consider the implications for human rights and human dignity in the design and implementation of scientific research studies .
In an explicit reliance on the right to benefit from science, then Assistant Secretary of State Michael Posner gave a presentation in October 2012 to an audience principally of scientists on Science and Academic Freedom in the Digital Age . Posner's remarks were framed in terms of Article 27 of the UDHR for which he offered his own interpretation, emphasizing the freedom to seek, receive and impart information about scientific progress, to ensure access to the benefits of science and technology without discrimination, and the need to ensure scientific advances are not used to commit human rights abuses.
Posner closed his remarks with a summary of "hard issues" that remained to be tackled, including identifying funding and research priorities that reflect societal needs; ensuring quality science education at all levels; removing barriers to scientific freedom; and encouraging international cooperation and the free flow of scientific knowledge.
Where To from Here?
Progress is steady and the purpose is clear: build a constituency, identify points of consensus and then focus on the challenging conceptual issues at the core of the right to enjoy the benefits of scientific progress. Over the past four years, as a constituency has grown that has interest in defining the right to enjoy the benefits of scientific progress a clear consensus has developed about core elements of the right. Now the greater challenge exists to grapple with the difficult conceptual questions that have been identified, including in my previous article, in the report of the Special Rapporteur and by Michael Posner. It is in finding an answer to these questions that the real significance and contribution of the right to benefit from scientific progress will be identified.
Two upcoming opportunities exist to address these questions: the first is a meeting of the AAAS Science and Human Rights Coalition on July 11 which is explicitly focused on addressing the challenging conceptual questions at the heart of the right to benefit from scientific progress ; and the second is a meeting planned in October 2013 by the Office of the High Commissioner for Human Rights which will follow-up on the Human Rights Council's consideration of this topic in 2012.
Every opportunity has to be taken to move beyond accepted understandings of the relationship between science and human rights and to move forward in defining the right to benefit from scientific progress. Without a clear understanding of the meaning of the right, implementation is not possible and the promise offered by this right will be lost.
 Jessica M. Wyndham, "The Human Right to Enjoy the Benefits of Scientific Progress" PER, Vol XXII, No. 4, Fall 2009
 AAAS Board of Directors, "On the human right to the benefits of scientific progress," Statement, April 16, 2010
 See, for example, Hans Morten Haugen, Technology and Human Rights – Friends or Foes? Highlighting Innovations Applying to Natural Resources and Medicine, Library of Human Rights 2 (2012); Aurora Plomer, 'In Defence of Helsinki and Human Rights', South African Journal of Bioethics and Law (2012), 5(2):83-86; Lea Shaver, 'The Right to Science and Culture', Wisconsin Law Review (2010) 121.
 International Treaty on Limitations and Exceptions for Visually Impaired Persons/Persons with Print Disabilities, June 25, 2013
 Audrey Chapman and Jessica Wyndham, "A Human Right to Science." Science 14 June 2013: Vol. 340 no. 6138 p. 1291 DOI: 10.1126/science.1233319
 Moral Science: Protecting Participants in Human Subjects Research. Presidential Commission for the Study of Bioethical Issues. December 2011. http://bioethics.gov/cms/sites/default/files/Moral%20Science%20-%20Final.pdf
 Michael H. Posner, 'Science and Academic Freedom in the Digital Age', October 10, 2012, AAAS. http://srhrl.aaas.org/coalition/Meetings/2012/Posner/Transcript.pdf
An Open Letter to Privacy Professionals
Alex Fowler is the Chief Privacy Officer for Mozilla, the independent organization behind Firefox and Firefox OS. He's one of the co-sponsors of the StopWatching.Us campaign, which has brought together over 100 organizations and has collected 500,000 signatures in support of openness for government surveillance. Alex was the Deputy Editor of the Professional Ethics Report, a publication of the American Association for the Advancement of Science.
The recent news about the extent to which the US government is monitoring the communications, online interactions and activities of American citizens brings into question our ethical responsibilities as privacy professionals.
All of the companies caught up in the news that complied with secret court orders to hand over bulk user data have privacy officers and dedicated teams of privacy professionals. Yet the extent to which any of these privacy teams were involved or were aware of these orders is unclear. This simple irony provokes reflection on the role of privacy professionals and our associated ethical and social responsibilities.
The role of the privacy professional has evolved over the past decade in response to the many ways personal information and data shape all dimensions of public, business and social interactions. We're specialized advocates for our organization's data subjects - users, consumers, employees, citizens. We work across business and IT functions to establish best practices and policies and to ensure compliance with hundreds of standards and laws governing how our organizations collect, use and safeguard personal data. In some sectors, we're also integral to business and product strategy.
Today, privacy professionals aren't licensed to practice and there's no standard ethical code of conduct to which we must adhere. However, privacy professionals are often members of other professions that are bound by standards of practice that include confidentiality and data protection. For instance, those who are lawyers must respect client confidentiality. Others who are healthcare professionals are bound by standards of patient confidentiality, and there are numerous codes of conduct for technologists that set forth norms for privacy and security.
We're obliged to honor commitments to data subjects about the specific information-handling practices and protections we set forth in notices, policies and other statements. It's also our responsibility to write these notices, policies and statements plainly and in a way that's not misleading. To the extent we work in jurisdictions with constitutional protections for privacy, we have ethical responsibilities to respect those. We're certainly bound to comply with the laws, regulations, contractual obligations and legal requirements pertaining to our organizations - to the extent that they are consistent with generally accepted standards of justice and human rights.
It's tempting to say that the US government is targeting individuals whose activities are unlawful or suspicious, and therefore our responsibilities related to the privacy of their data fall outside ethical or legal norms. But this is a slippery slope, and difficult to justify in the context of bulk orders for a company's data.
As privacy professionals, do we have ethical obligations to the people whose data are our professional responsibility, or only to our employers? How do we handle conflicts of loyalty that arise? Does public safety trump privacy in every case and in any circumstances? Do we have obligations to report - even secretly, under legal requirements - our objections?
As one prominent leader in our community told me, "We should be committed to the welfare of our data subjects through a sworn oath that commits us to our principles in some binding manner. For many, though, it's the paycheck that binds." As I see it, if we're to continue to be trusted as a profession that's dedicated to transparency, accountability and data protection, we need to earn the public's trust by having the courage to confront the real situations and limitations we face. For that reason, I'm appealing to all of our colleagues to weigh in on this discussion. For my next post, I will incorporate the ideas generated here and develop a draft code of ethics for further debate.
It's vital that our profession be on the forefront of the public debate about balancing rights to privacy with needs for safety and security. Reporter-source confidentiality or attorney-client privilege strengthen the institutions within which those professions operate, and we have to use this moment to develop similar frameworks for our profession and the people whose data we protect.
The original blog post is available online at: https://www.privacyassociation.org/privacy_perspectives/post/an_open_letter_to_privacy_professionals
"Research Purity": An Attainable Goal?
The UK is on a mission to halt offenses to scientific integrity as increasing reports of scientific misconduct threaten public support of science and the potential benefits from the field. In order to qualify for funding, universities will now be required to comply with the Concordat to Support Research Integrity. Additionally, a June 2013 meeting among the top UK funding bodies will further establish rules for policing British scientists by defining what evidence will be required to guarantee that research is reliable. A recent article in The Independent also stated that, "Britain's leading science institutions will be told on Monday that they will be stripped of many millions of pounds in research grants if they employ rogue researchers who fake the results of experiments." Grant allocators believe that with these policies, significant strides can be made towards "research purity" within three years .
Retractions of scientific articles, due to both error and misconduct, have been increasing. While there were only about 30 retractions annually in the early 2000s, in 2012 alone, there were over 500 . Other incidents have also made a lasting impression, including sharp declines in vaccinations and subsequent epidemics of measles and mumps, which occurred after Andrew Wakefield claimed that there was an association between the MMR vaccine and autism. Wakefield's article was later retracted due to misconduct and numerous reports have since found no correlation between MMR vaccines and autism . Additionally, the UK recently saw the incarceration of their first scientist earlier this year when Steven Eaton was jailed for three months for falsifying data in an anti-cancer drug trial .
To address issues such as these, Universities UK led an initiative resulting in the publication of the Concordat to Support Research Integrity in July of 2012. The concordat outlines five commitments that those engaged in research can make to help ensure high standards of research integrity. It also recommends that research institutions appoint a staff member to oversee research conduct and that universities publish annual reports summarizing the misconduct cases investigated that year, what they have done to strengthen research integrity, and how they have made their processes for dealing with misconduct allegations transparent and fair. Signatories will also be encouraged to attend an annual forum on assessing progress on the state of research integrity in the UK .
Research Councils UK, which invests around £3 billion in research conducted at UK universities each year, has made compliance with the Concordat mandatory to receive funding . Additionally, the Higher Education Funding Council for England (HEFCE), which distributes public money (£3,883 million towards teaching and research for 2013-14 ) to universities in England, will make compliance with the Concordat a new condition of its grants to higher education institutions. For the 2013-14 academic year, universities will be allowed to state they are working towards fulfilling the requirements, with full compliance necessary from the 2014-15 year onwards . Also on board are the charity giant Wellcome Trust, and institutions such as the Academy of Medical Sciences and the UK Research Integrity Office. However, while many agree on the benefits of increased commitment to integrity and transparency, there are also those who believe these new regulations may not be enough. The world will be watching as this approach unfolds in the UK.
The Federal Bureau of Investigation (FBI) and the Manhattan US Attorney's office announced charges against three New York University researchers on May 20, 2013. A criminal charge of commercial bribery conspiracy has been filed against three Chinese citizens, charging Yudong Zhu, an Assistant Professor in the Radiology Department of NYU-Langone Medical Center, Xing Yang, a research engineer, and Ye Li, a postdoctoral fellow. Mr. Yang and Dr. Li risk a maximum of five years in prison, while Dr. Zhu, who faces an additional charge of falsification of records in a federal grant, risks a combined maximum of 25 years.
Calling the researchers, "foxes in the henhouse," US Attorney Preet Bharara described the researchers' undisclosed affiliations with United Imaging Healthcare (UIH), a Chinese medical imaging company, and the Shenzen Institute of Advanced Technology (SIAT), a government-funded research institute in China . In failing to list his relationships in a federal grant application to the National Institutes of Health, Dr. Zhu is accused of illegally acquiring a 5-year, multi-million dollar federal grant from the NIH in 2010 .
The bribery charges stem from claims that a UIH executive paid for Mr. Yang's graduate school tuition, Dr. Li's rental apartment, and travel to China for both Mr. Yang and Dr. Li in exchange for non-public research information on prototypes, experiments, and project updates . Dr. Zhu has also told FBI investigators that he received almost $500,000 from UIH since 2008 . The professor concealed additional material conflicts from NYU and the NIH, namely a patent he holds related to MRI technology and his leadership on a similar research project at SIAT. The concealed affiliations came to light after security cameras caught Mr. Yang taking photos of equipment in a research area that sparked an investigation by the FBI. Though the FBI succeeded in arresting Dr. Zhu and Mr. Yang, Dr. Li is believed to have successfully fled to China .
The role of funding agencies in supporting Responsible Conduct of Research was addressed during the 2nd Annual Meeting of the Global Research Council. The Global Research Council, a virtual organization representing science and engineering funding agencies worldwide, promotes data sharing and collaboration between global funding agencies. The Council held that while research institutions and researchers themselves maintain ultimate accountability for conducting research within the bounds of the Responsible Conduct of Research, funding agencies are also responsible for ensuring that the highest standards of research integrity are being implemented in the projects they support. The Council adopted the following seven Principles that underlie the responsibilities of funding agencies in promoting research integrity:
- Leadership: Funding agencies should be exemplars of responsible management of research programs.
- Promotion: Funding agencies should encourage the development of policies that promote research integrity.
- Education: Funding agencies should advocate training and new educational initiatives in research integrity.
- Transparent Processes: Funding agencies should publish policies and procedures to address allegations of research misconduct and that promote research integrity.
- Response to Allegations of Misconduct: Funding agencies should emphasize that investigations of misconduct should embody accountability, timeliness, and fairness.
- Conditions for Research Support: Funding agencies should emphasize research integrity as a condition for continued funding.
- International Cooperation: Funding agencies should work collaboratively to advocate for research integrity internationally.
In a victory for free expression, on April 24, 2013, the British Parliament passed a widely anticipated reform of the UK's libel laws. The legislation, named the Defamation Bill, is the product of a longstanding effort to amend existing laws in order to provide greater protections to journalists, authors and publishers from trivial, but costly, lawsuits that risk "chilling" public debate .
Calls for reform came after several troubling decisions were handed down over the last decade, most notably against the author Rachel Ehrenfeld, whose book, "Funding Evil: How Terrorism Is Financed and How to Stop It," became the target of a British libel suit even though the book was not marketed in the UK. The case, which resulted in a $225,000 award against the author, led the United States Congress to pass the Speech Act of 2010, ensuring the protection of journalists, authors and publishers from foreign libel judgments and allowing countersuits against the original plaintiffs for treble damages. John Wittingdale, the chairman of the Culture, Media and Sport Select Committee in the British Parliament called the developments a "national humiliation." 
Scientists, science writers, and journalists have also been the target of bullying lawsuits, such as the 2008 libel suit filed against the journalist Ben Goldacre and the British newspaper, The Guardian, by the vitamin salesman and controversial doctor Matthias Rath. Rath objected to the publication of a series of articles describing his campaign to use his vitamins to fight AIDS instead of antiretroviral medication in South Africa (Rath lost) . Even the Nature publishing group was forced to fight a spurious libel claim after describing apparent scientific misconduct by an Egyptian physicist .
The reforms in the Defamation Bill have received plaudits from both journalists and scientists. Most relevant to the scientific community is the decision to privilege, or render immune, statements in peer-reviewed papers from libel claims. In addition, the abuse of companies' right to reputation is restricted by a new requirement to show "serious financial harm" in order to proceed with the suit. The bill also attempts to curtail "libel tourism" by barring action against non-European residents in UK courts unless it can be shown that England is the most appropriate place to pursue the case. Finally, the bill creates a new defense of "responsible publication on matters of the public interest" for those accused of libel.
Simon Singh, a science writer who has been a victim of bullying libel suits, reacted to the bill's passage by saying, "The science community has played a major role in giving the Defamation Bill the momentum required to get it through the Parliamentary process. It is undoubtedly a bill to be welcomed because it achieves a fairer balance between free speech and the right to reputation."  The editors of the journal Nature also welcomed the bill, writing that the legislation "should improve the communication of science by making it easier to speak truths that some may not wish to hear." 
However, some were quick to point out that the bill has serious shortcomings. Robert Dougans, a solicitor-advocate for Bryan Cave LLP with expertise in libel cases, concluded, "Frankly, I cannot see this having made any difference in any case I have been involved in, and I wish an opportunity had been taken to re-think defamation law ab initio."  Dougans and others point to the bill's lack of clarity regarding the application of libel law to the online community, absence of mechanisms to promote speedier cases and reduced costs, and the effective abolition of jury trials in libel cases.
According to Ehrenfeld, now the director of the American Center for Democracy and its Economic Warfare Institute, perhaps the bill's most significant failure is the omission of a robust "public interest" defense as established in the United States by the 1964 Supreme Court decision in New York Times, Co. vs. Sullivan. "Although the restricting of libel tourism should be considered an achievement," observed Ehrenfeld, "If I were a British academic…such progress would do little to protect me or other British academicians [because] we would still lack a reliable legal defense from libel." 
There is an age-old debate over whether the purpose of science is purely for discovery or for solving social and economic issues. Canada's government recently chose its side of the debate, releasing a 2013-2014 budget that will drastically cut funding for basic research, shifting towards research deemed commercially viable . The National Research Council (NRC) of Canada, which runs most of the federal government's laboratories, faces some of the most significant changes, being transformed into a concierge service to provide businesses with connections to federal programs and facilities . The government also plans to spend CAN$19.5 million (US$19.5 million) on a pilot program allowing small businesses to obtain credit notes to help pay for research, technology and business development services at academic or private research institutions . In regards to the changes, NRC President John McDougall claimed, "Scientific discovery is not valuable unless it has commercial value. We are committed to being a strong partner for innovation, and … we will measure our success by the success of our clients." 
While the Canadian government claims that this new emphasis on industry-driven research will stimulate the economy, many argue that the decrease in basic research may actually stifle innovation. As stated by James Turk, the executive director of the Canadian Association of University Teachers (CAUT), "Basic research really is what creates the scientific capital out of which applied research, practical things, commercial things, arise." 
In addition to the defunding of basic research, recent headlines have focused on the "muzzling" of scientists by the Canadian government. There have been reports of the government prohibiting scientists from discussing unapproved topics with the media, especially those that contradict current government policies [6, 7]. Science journalists have also complained about a lack of "timely access" to scientific information due to active governmental obstruction of requests to interview scientists. These charges have incited an investigation into potential violations of the Access of Information Act , as many are concerned that the censoring of scientific information will severely limit scientific debate and diminish the ability of science to contribute to public welfare.
In an effort to preserve the integrity and independence of science, CAUT, the national voice of 68,000 faculty and staff members from 120 universities across the country, recently launched a major national campaign called "Get Science Right," which highlights problems in the government's new approach to science, provides alternatives, and encourages Canadians to take action. The campaign's main requests include re-investment in basic research, separation of research funding agencies from industry, and establishment of a Parliamentary Science Officer to provide legislators with independent and non-partisan advice . Turk urges, "We owe it to all Canadians to get science right." 
The Secretary's Advisory Committee on Human Research Protections (SACHRP), an advisory committee to the US Department of Health and Human Services (DHHS), issued its final document on Considerations and Recommendations Concerning Internet Research and Human Subjects Research Regulations, with Revisions on March 12, 2013 .
According to the Committee, current human subject regulations, which were written over thirty years ago, do not address many issues that stem from the digital age, including the risks that come from incorporating the internet into our daily lives such as electronic monitoring, hacking, phishing and lack of appropriate security measures. "Internet research" includes multiple forms of research, including research studying information that can be found on the internet without direct interaction with human subjects, research that uses the internet as a tool for interacting with subjects for recruitment purposes, research about the internet itself and how it affects people, research about internet users, and research that uses the internet as an intervention tool . Internet research covers both the internet as a tool for research and as a locale or venue of research, and this tool-or-venue distinction is blurring with the increasing popularity of social media that allows for the creation and the exchange of content generated by users.
New challenges arise among all the fundamental aspects of human subject research, from recruitment to informed consent to data indentifiability. This requires different approaches to ensure appropriate measures safeguard confidentiality, privacy and voluntariness by IRB review, and by placing additional responsibilities on the researchers and investigators. Although the document states that the Committee is not encouraging a more stringent process for reviewing internet research, but rather a reasoned and balanced approach to reviewing internet research protocols, some scientists are concerned. They fear the recommendations could add time, complexity and cost to research studies by increasing regulations and putting entirely new areas of research under the authority of IRBs .
The regulatory definition of "human subjects" has not changed, but new forms of identity exist in the internet, like avatars or internet personas. Virtual representations of human subjects are created when personally identifiable information about living individuals is obtainable through their virtual representation. IRBs and investigators need to consider identity verification in internet research a major issue. Low risk studies may not require more than minimal identity verification, but high risk studies may call for multiple-factor authentication when sensitive information is transferred. Furthermore, sometimes personally identifiable information cannot be anonymous due to a third-party policy, like the policy Facebook has about providing a user's real name.
Any categorization of information on the internet must recognize that people falsely assume that information is private, and therefore a participant's expectations on privacy may not inherently be 'reasonable'. Even in the most public setting, individuals would reasonable expect eavesdropping to be considered inappropriate behavior, raising ethical concerns since this is what internet savvy users can easily get away with. Internet research also offers many opportunities for deception, like researchers creating fake identities to observe the behavior and action of others, with little repercussion for being caught.
These recommendations have not been endorsed by the DHHS secretary, but administrators claim they are already being used, even if they are not officially required because direction is so urgently needed . Some IRBs have developed their own working guidelines for investigators conducting internet research.
Ethics and Science: An Introduction
In their recently published book, Ethics and Science: An Introduction, Carl Mitcham and Adam Briggle discuss the complexities that exist at the intersection of ethics and scientific progress . Mitcham and Briggle are both well-renowned figures in the burgeoning field of ethics and science; their previously published works include such texts as Encyclopedia of Science, Technology, and Ethics (Mitcham) and A Rich Bioethics (Briggle).
Ethics and Science is divided into three distinct 'themes' that explore the intricate and constantly evolving relationship between ethics and science. The first portion of the book sets the stage for discussing how ethics and science inform each other by first describing the general phenomena of ethics and science. Here, the authors outline general ethics and philosophy frameworks and also describe the origins and universality of the scientific method. The reader is then introduced to the second major theme, responsible conduct of research and research integrity. This section of the text focuses on such questions as data representation and the risks and benefits of human and animal research. Finally, in the last section of text, Mitcham and Briggle broach the topics of science in society and whether scientists have a responsibility to consider the societal implications of their work. In particular, the reader is asked to examine the role that science plays in creating policy (and vice versa), how science interacts with well-established cultural norms, and the intersection of science, engineering, and technology within an ethical framework.
Ethics and Science is structured in a clear, engaging format that inspires critical thought in the reader. Each chapter opens with a historical incident to provide context for the subsequent discussion, and concludes with a case study, ethical questions to consider, and sources for additional information. In this manner, the reader is encouraged to actively engage the ideas and arguments presented in the text and to then form his or her own conclusions regarding the issues presented. Prior ethics, philosophy, medical, or scientific training is not needed in order to benefit from this text, increasing its accessibility to myriad audiences. The counterpoint of this is that the text can at times seem superficial; the reader is acquainted with an array of topics, but none in-depth.
Ethics and Science is an illuminating introductory text that effectively questions how science and ethics inform each other. Notably, this book encompasses both the ethics of doing science well as well as the societal implications of scientific research. Therefore, the reader is not only informed of the traditional issues associated with responsible conduct of research, such as data misrepresentation, conflict of interest, funding sources, informed consent in clinical trials, etc., but is also exposed to the broader issue of social scientific responsibility. The text approaches crucial questions such as whether genes are patentable, the role of scientists in controlling media representations of their findings, how to monitor access to dual-use research, and the formation of science policy. However, the authors could have paid more attention to the legal implications and responsibilities associated with scientific progress; they do broach the topic of science in the courtroom, but only superficially. Similarly, it would have been nice to see a section detailing the debate around Open-Access journals and peer review. Overall, Ethics and Science is a helpful introductory resource for scientists, philosophers, and bioethicists, providing an informative framework to approach and understand the juncture of science and ethics.
 Mitcham, Carl and Adam Briggle. Ethics and Science: An Introduction. Cambridge University Press, 2012.
Call for Papers - The Journal of Philosophy, Science & Law requests papers related to the ethical and legal implications of medical interventions for individuals with disabilities. Suitable topics for this call include the use of bionic eyes, cochlear implants, growth hormones, neuroenhancement drugs, limb lengthening surgeries, and laws that influence decision making on behalf of disabled children. The Journal's publication guidelines can be found at http://www.miami.edu/ethics/jpsl/submission.html. The deadline for abstract submission is October 1, 2013.
Call for Papers - On September 26-27, 2013 the Third Annual Western Michigan University Medical Humanities Conference will take place in Kalamazoo, MI. The conference aims to explore a range of themes within the medical humanities including a primary focus on emergent technologies in health care and humanities, and how these affect patient care, the patient experience, and the effectiveness of the practice of health care. Abstract submissions are now being accepted on topics that engage some facet of the medical humanities, including their importance and conceptual scope. Applications are due by July 15. Additional information is available at http://www.wmich.edu/medicalhumanities/conference2013/.
Call for Papers - The 15th International Conference on Ethics Across the Curriculum is now accepting paper submissions. The conference will be held in Corvallis, OR on October 3-5, 2013. The topic for the upcoming meeting is "conscience, character, and culture." Submissions are encouraged in such areas as conscience and virtues; conscience and moral judgment; conscience and methods of ethical deliberation; cultural formation of conscience; moral sentiments; civic aspects of conscience, including freedom of conscience, conscientious refusal, conscientious objection, civil disobedience; conscience and professional commitments; and whistleblowing. Submissions are due July 31, 2013. For more information go to http://www.rit.edu/cla/ethics/seac/conferences.html.
Call for Papers - The 8th International Conference on Applied Ethics, which will be held in Sapporo, Japan on November 1-3, 2013, seeks paper submissions on this year's theme of emerging technologies. Papers on applied ethics that address political, economic, social and cultural issues will also be accepted. Abstracts are due by June 30, 2013. More information can be found at http://ethics.let.hokudai.ac.jp/en/events.html#8ae.
Call for Papers - The IEEE International Symposium on Ethics in Engineering, Science, Technology aims to respond to the needs and aspirations of a rising global professional community and to promote highest standards of ethical conduct among its members. The Symposium will take place in Chicago, IL on May 23-24, 2014. The Symposium intends to bring together scientists, engineers, ethicists and practitioners from different disciplines to discuss questions and concerns related to ethics in science, technology, and engineering. Issues will be explored both from a scientific point of view and from a social or individual aspect, including global, multicultural perspectives. For more information, visit: http://sites.ieee.org/ethics-conference/.
Conference - PRIM&R's 2013 Advancing Ethical Research Conference will be held in Boston, MA on November 7-9, 2013. In addition to the formal agenda, a number of pre-programs will be offered on November 6. This year's meeting has been designed to reflect and respond to the changes in research and their implications for ethical oversight. Among the topics are best practices in institutional review board (IRB) administration, challenges related to genetics and genomics, global research, privacy in the 21st century, and much more. Additional information and registration is available at http://www.primr.org/aer13/.
Conference - The 12th Annual Compliance & Ethics Institute will take place in Washington, DC on October 6-9, 2013. Meeting attendees will learn the latest methods and strategies for developing and improving their compliance programs. The conference will cover six tracks: risk, ethics, case studies, international/multinational, advanced discussion groups and hot topics in compliance. Learn more at http://www.complianceethicsinstitute.org/.
Program Solicitation - The National Science Foundation is seeking proposals for the development of an Online Resource Center for Ethics Education in Science and Engineering (ORCEESE). The Program will fund one five-year award (2014-2018). Full proposals are due on August 7, 2013. For the complete program solicitation, see: http://www.nsf.gov/pubs/2013/nsf13558/nsf13558.htm.