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Ethics and the privacy pendulum3

 

As the development of new technologies advances at a rapid pace, the ability to access, search and link information in new and different ways also continues to grow. Current legislative and governance frameworks regarding data privacy were developed at a time when these possibilities were not foreseen and are now an inadequate fit for this brave new world. Research ethics guidelines in particular struggle to accommodate not only the new mediums of communication, such as social media, but the ways in which this type of data can be harvested (often unknowingly) and connected to formerly disparate pieces of benign or de-identified data to create incredibly detailed pictures of peoples’ lives, views and aspirations. Ethics committees also grapple with assessing the risks and benefits of research at a time when the privacy pendulum has swung from what was a common central belief within the community (and indeed a human right) of the importance of protecting privacy at all costs to a more stratified set of values that include younger generations who actively seek out public connectedness and openly share almost all aspects of their lives in the public domain. How are the views of these generations and their sense of what constitutes risk and benefit captured in the deliberations of ethics committees whose membership often (although not exclusively) is made of Gen X-ers or baby boomers?

One of the real strengths of ethics committees is the diversity of experience and opinions they bring to bear on debating and resolving the ethical challenges of research that is driving new frontiers of technology and its exploration of all that it means to be human. Ensuring multi-generational membership of ethics committees that capture these stratified values can only add to this strength. However there is also a need for researchers and committees to stay engaged with public debate to understand evolving community values regarding privacy and our information. Why? Because one thing is for certain – a pendulum never stays at the peak of its swing for long and it already appears to be on the move again. This time the driving force is not a generational change but the rapid rise of big data and the associated realisation of the tangible market value of our information. Knowledge is power, and data, and the ability to harness and explore it in all its forms, is now big business. As individuals and enterprises join the new race to protect the IP associated with their data and mitigate against the risks that can arise from its misuse, they are also demanding their fair share of the benefits that can flow from its potential exploitation. Principles of privacy, justice and consent in this new context will require new considerations by researchers and ethics committees alike.

This blog may be cited as:
Pitkin, C (2015, 6 October) Ethics and the privacy pendulum. AHRECS Blog. Retrieved from https://ahrecs.com/human-research-ethics/ethics-and-the-privacy-pendulum

Cathy Pitkin
Manager Social Responsibility and Ethics CSIRO

Cathy Pitkin is responsible for the management of human and animal CathyPitkinresearch ethics for CSIRO. In this role she has led the development and implementation of a human research ethics framework for the organisation and manages the ethics review and associated support process for research scientists undertaking a diverse range of social, biophysical and interdisciplinary research. She has over 10 years experience working with researchers and research managers across multiple disciplines in considering the ethical dimensions of their research and ensuring that ethics principles are embedded as a core part of research design and implementation. This experience includes research that involves emergent technologies, privacy and other related social considerations. Cathy has an in-depth knowledge of current national ethics guidelines and related legislation and broader frameworks for research ethics governance. She regularly provides training to researchers and ethics committee members and has developed a suite of resources to support good research practice.

Prior to this role she was Director of Communication, Education and Training with CSIRO’s Social and Economic Integration Emerging Science Initiative which focussed on building capacity for and greater consideration of social and economic issues in biophysical research.

Before joining CSIRO Cathy worked in a range of community development, training, project management and communications roles in the private, government and NGO sectors. She has a Masters degree in community and international development and undergraduate degrees in social science and business.

Do we need consent for the continued use of children’s biological samples and data in research – and what if the grown up children cannot be located?1

 

Parental consent is sufficient to authorize research involving infants and young children who do not have the capacity to take part in such decisions. But what happens when the children grow up and the research is ongoing?

According to the National Statement, where research is ‘complex or long-running, or participants are vulnerable’, consent ‘may need to be renegotiated or confirmed’ so that research participants are ‘given the opportunity to continue their participation or withdraw’. This suggests that at some point, researchers will need to get consent from the children themselves. The difficulty is that when children reach an age where they can consent for themselves and parental consent no longer applies, they may not know that they are involved in such research.

A study clarifying ethical responsibilities in the Australian paediatric biobanking context, reports that the responsibility to inform children when they are able to decide for themselves, belongs to no one: “Most children at 18 wouldn’t know about samples” and there is “no onus to inform people”. This state of affairs will likely cease to be a problem as new biobanks and studies get set up and better procedures are put in place. Currently though, we are left with questions about whether it is ethically acceptable for researchers to use samples and data, given with parental consent, from children who are now grown up and who cannot be located.

A U.S. study has addressed this very topic. It reports that most adults are not concerned about continued use of their samples and data collected during childhood but they want to be asked and they are generally willing to provide consent. Nevertheless there were 26% who think it is not acceptable to use their samples and data if they cannot be contacted. The authors conclude that adults have an interest in decision-making and that should be respected. Their consent for continuing research should be sought, but if they cannot be located, ‘it is generally acceptable to continue to conduct research’. The authors concede though that the scenario they use in the interviews lacked detail about things that would affect people’s attitudes – things such as risks, the type of study and identifiability.

So, how should researchers and Human Research Ethics Committees respond if the source of the sample cannot be found? Can researchers use the sample or should they throw it out?

The answer is – it depends. The National Statement reminds us that there is a need for researchers and HRECs to engage in ‘deliberation on the values and principles’, exercise their judgement, and have ‘an appreciation of context.’ What this means is that to arrive at an ethically defensible position for continuing without consent, researchers will need to explain their position, giving reasons for continued use without consent.

In order to justify using previously collected samples/data where the source cannot be located, researchers need good ethics based reasons for using this sample rather than a different sample from someone who has given consent or is willing to donate a new sample. There may be good reasons. For instance, good ethics based reasons may be to do with rare conditions and limited number of samples. Whatever the reasons, these reasons will be weighed against reasons for not using the sample without consent. Reasons in support of the need for consent after sources become adults, are autonomy based i.e. participation should be a reflection of that person’s own choices or reasons, not that of parents or researchers. A different but important reason is that proceeding without consent poses a threat to public trust and confidence in research – and the success of this type of research depends on the support of the public and their willingness to contribute. Reasons to continue without consent based simply on costs, time and inconvenience for researchers do not do the job.

References

Goldenberg, A. J., Sara, C. H., Botkin, J. R., & Wilfond, B. S. (2009). Pediatric Biobanks: Approaching Informed Consent for Continuing Research After Children Grow Up. The Journal of pediatrics, 155(4): 578-583

NHMRC (2007) National Statement on Ethical Conduct in Human Research. Accessed 4 September, 2015, from http://www.nhmrc.gov.au/guidelines-publications/e72

Spriggs, M., and C. Fry. 2015. Clarifying ethical responsibilities in paediatric biobanks. AJOB Empirical Bioethics Available early online at: http://www.tandfonline.com/eprint/QDVEzAwZsTqT9QkwvBjB/full

Dr Merle Spriggs BA (Hons), M.Bioeth., PhD
ARC Research Fellow
Children’s Bioethics Centre / Centre for Health Equity,
University of Melbourne.

This blog may be cited as:
Spriggs, M (2015, 4 September) Do we need consent for the continued use of children’s biological samples and data in research – and what if the grown up children cannot be located?. AHRECS Blog. Retrieved from https://ahrecs.com/human-research-ethics/do-we-need-consent-for-the-continued-use-of-childrens-biological-samples-and-data-in-research-and-what-if-the-grown-up-children-cannot-be-located

Dr Merle Spriggs (mspriggs@unimelb.edu.au) is a Research Fellow at the Children’s Bioethics Centre, Royal Children’s Hospital; the Centre for Health Equity, Melbourne School of Population and Global Health, University of Melbourne; and an Honorary Research Fellow at the Murdoch Childrens Research Institute. She has developed substantial educational resources about consent for Human Research Ethics Committees (HRECs) and researchers who conduct research involving children. Other recent research includes ethical issues and responsibilities in paediatric biobanking, e-health ethics, specifically the ethics of internet-based research and the ethical issues of electronic health records. Merle has over 20 years experience on hospital and university Human Research Ethics Committees and she has been an expert witness for two US law firms in cases involving child research. She is also a member of the Royal Children’s Hospital Clincical Ethics Committee and Clinical Ethics Response Group.

Current projects: Merle is part of a team working on an ARC Discovery Project: Involving children in social research: Balancing the risks and benefits; she is also leading a project titled: ‘Using research participants as co-researchers: Ethical considerations” funded by the University of Melbourne, Ethics and Integrigy Development Grant Scheme.

The perils of anonymous online research and risk: Two hands tied behind your back1

 

Online research offers many advantages. If well designed, a web survey/task or other data collection tool can collect robust data from large populations, incorporating validations and other tools (including anonymous cookies to minimise the risk a participant submits more than one set of responses). These techniques can ensure any data collected is more likely to be useful and reliable. Collecting data online also means that participant responses to survey questions/performance in tests can be directly added to the data set for analysis (rather than transposed later).

Another apparent ethical advantage of online research is that it can be collected anonymously so that not even the researchers know who disclosed what. This anonymity can seem especially attractive when individuals are to be asked embarrassing questions, asked about sensitive matters and/or where there are risks associated with the collected data. It might then seem easy to respond to the risk questions in an application for ethical review:

“There are no risks, no matter requiring attention because the researchers won’t have data that can be traced to an individual.” Right?

Ordinarily, if a participant used an interview to disclose significant mental anguish an experienced interviewer could suspend the data collection to counsel a participant and to urge them to seek help from someone with appropriate training. If an interviewer was sufficiently worried that there was reason to believe there was imminent and serious risk to the interviewee or others they could decide to alert the appropriate authorities.

Neither options are available to a researcher conducting anonymous online research. This enables a researcher to evade any mandatory reporting requirements to which she or he might be ordinarily subject. But, is this the right thing to do?

The same argument might be true for offline research (such as an anonymous paper & pencil survey). However the very wide scope of online data collection and the degree to which people appear very willing to disclose things online, does appear to increase the likelihood such disclosures will be made in online data collection.

I have seen this happen, where a participant used an online anonymous survey seeking views on an apparently innocuous psychological subject to disclose an intention to self-harm. Not only were the researchers unable to take any action, their powerlessness to act caused the research team (especially the junior members) a great deal of distress.

The implications of this case might be that there are some subjects and potential participant pools where data should never be collected anonymously. This might be the case even when the informed consent material urge participants to seek expert support if they are distressed. In fact in the case I am referring to above, such a statement was in fact present in the informed consent materials. Consequently, perhaps we should consider whether there are circumstances where data should initially be collected in an identified form, only to be de-identified once the researchers have determined there are no compelling reasons obligating them to act.

Of course such a mechanism raises its own ethical, risk, consent and legal considerations.

Gary Allen,
Office for Research,
Griffith University
Gary’s AHRECS profile
Gary’s Griffith University profile

This blog may be cited as:
Allen, G (2015, 7 August) The perils of anonymous online research and risk: Two hands tied behind you back. AHRECS Blog. Retrieved from https://ahrecs.com/uncategorized/the-perils-of-anonymous-online-research-and-risk-two-hands-tied-behind-you-back

Is the sky falling? Trust in academic research in 20152

 

For anyone that has been paying even the slightest attention to scholarly publishing over the past few years, it will have been impossible to ignore what seems to be a growing number of astonishing advances published in prestigious journals presented at press conferences by proud scientists, which is then followed by questioning of said findings first on twitter, then on blogs, then in newspapers, with finally the very same scientists facing up to the same media, but this time to have to report that their findings were not correct, maybe even fabricated. Corrections follow, sometimes quickly, sometimes slowly, of whole or part of the published research. Those outside academia wonder what is going on.

In the background it might actually seem that the issue is worse. For every dramatic case that hits the headlines, there are many more where researchers only make their findings partially available or when asked can’t find or make available to others the data that underlie their findings – not because of fraud or fabrication but because of sloppiness, or poor training, or simply a lack of proper structures in place around the research.

What’s going on? Underlying it all is the often poorly appreciated fact that academic advances (especially in science) rarely, if ever, advance in clear quantum leaps. More often research findings are messy and incremental. Yet despite this fact, current ways of measuring academics and academic institutions incentivise – even require – academics to compete for publication in highly selective journals and punish those that don’t, and thus reward behaviour that fits with this system. This issue was acknowledged explicitly by the UK Nuffield Council on Bioethics in their report, the Culture of Scientific Research in the UK which noted that the “‘pressure to publish’ can encourage the fabrication of data, altering, omitting or manipulating data, or ‘cherry picking’ results to report.”

However, the good news is that reform is in the air about how science is assessed and viewed. This reform is  partly derived from external pressures resulting from the high profile cases, but more constructively, and probably sustainably, arise from the many conversations circulating over the past several years among academics and more enlightened publishers, policy makers and funders.

Such initiatives have started with an increasing understanding that measuring worth and rewarding tenure on the basis primarily of a single, commercial, measure of journals’ (and by implication scientists’) worth – the Thomson Reuters journal impact factor is now out-dated (if it was ever valid). An important element of the change is the technical development of practical alternatives such as new article level and alternative metrics, which aim to measure multiple different ways of impact, (e.g. those from PLOS, Impact Story, Altmetic). Crucially, these technical developments are now increasingly backed by international agreement that change is needed, highlighted by DORA, and the UK’s HEFCE.

Other initiatives, such as governments’ (including the Australian Government’s) interest in wider societal impact and especially business competiveness – none of which seem to be well predicted by current journal-level metrics – could, and probably should, also lead to an unpicking of the dominance of older metrics. Equally important however, is the culture of openness that is now increasingly permeating academia, which includes open access to research but more crucially in this context also openness to the research process itself, including to the processes and underlying data. And all of this feeds into another increasingly importantly concept, that of transparency in reporting and reproducibility, which can counteract waste in research and the changes needed for that.

So we are at a time of great change, when the technology that supports open availability of data and publications, new methods of research and academic assessment and a prioritizing of reproducibility are all moving to a research system that has the potential to better support society’s needs. How quickly these opportunities are all taken up remains to be seen – and points to the harder challenge – that of changing the mindset of individuals and institutions.

Dr Virginia Barbour, COPE Chair
Brisbane, Australia
email: cope_chair@publicationethics.org
web: http://publicationethics.org/

These comments reflect my personal opinions and not necessarily those of COPE or my employers

This blog may be cited as:
Barbour, V (2015, 26 July) Is the sky falling? Trust in academic research in 2015. AHRECS Blog. Retrieved from https://ahrecs.com/research-integrity/is-the-sky-falling-trust-in-academic-research-in-2015

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