tag:theconversation.com,2011:/ca/topics/patient-confidentiality-32839/articlesPatient confidentiality – The Conversation2020-01-07T13:14:52Ztag:theconversation.com,2011:article/1287692020-01-07T13:14:52Z2020-01-07T13:14:52ZEPA’s ‘secret science’ rule will make it harder for the agency to protect public health<figure><img src="https://images.theconversation.com/files/308532/original/file-20200105-11896-16h1pma.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C5176%2C3453&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Blood samples from pediatric health screenings can provide valuable data for public health research.</span> <span class="attribution"><a class="source" href="http://www.apimages.com/metadata/Index/Lead-Testing-Michigan/93888290c7de46c28d566fe90abe955c/18/0">AP Photo/Carlos Osorio</a></span></figcaption></figure><p>The Trump administration has worked to <a href="https://www.nytimes.com/interactive/2020/climate/trump-environment-rollbacks.html">weaken U.S. environmental regulations</a> in many areas, from water and air pollution to energy development and land conservation. One of its most controversial actions is known as the “<a href="https://theconversation.com/why-the-epas-secret-science-proposal-alarms-public-health-experts-96000">secret science” rule</a> because it would require scientists to disclose all of their raw data, including confidential medical records, for their findings to be considered in shaping regulations. This measure <a href="https://www.federalregister.gov/public-inspection/2020-29179/strengthening-transparency-in-pivotal-science-underlying-significant-regulatory-actions-and">has just been finalized</a>.</p>
<p>This proposal drastically limits what kinds of scientific and medical research the Environmental Protection Agency can draw on as it makes policy. According to press reports, an EPA advisory panel with <a href="https://www.washingtonpost.com/news/energy-environment/wp/2017/11/04/pruitts-new-science-advisers-add-more-industry-experts-conservatives-to-the-mix/">many members appointed by President Trump</a> <a href="https://www.nytimes.com/2019/12/31/climate/epa-science-panel-trump.html">criticized the proposal</a>, saying it would do little to increase transparency and could limit what kinds of research get done.</p>
<p>As director of a <a href="http://www.urbanhealth.iupui.edu/">center on urban health</a>, I study issues including <a href="https://scholar.google.com/citations?user=MEp4948AAAAJ&hl=en">human exposure to toxic substances</a> such as lead and mercury. Confidential patient information is a key resource for my work, and I believe that children’s health will suffer as a direct result of this rule.</p>
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<a href="https://images.theconversation.com/files/308533/original/file-20200105-11909-u3qskf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/308533/original/file-20200105-11909-u3qskf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/308533/original/file-20200105-11909-u3qskf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=452&fit=crop&dpr=1 600w, https://images.theconversation.com/files/308533/original/file-20200105-11909-u3qskf.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=452&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/308533/original/file-20200105-11909-u3qskf.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=452&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/308533/original/file-20200105-11909-u3qskf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=568&fit=crop&dpr=1 754w, https://images.theconversation.com/files/308533/original/file-20200105-11909-u3qskf.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=568&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/308533/original/file-20200105-11909-u3qskf.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=568&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Despite steps such as phasing out leaded gasoline, lead poisoning is still a serious public health problem across the U.S.</span>
<span class="attribution"><a class="source" href="https://directorsblog.health.azdhs.gov/program-successfully-reduces-unhealthy-lead-levels-in-children/">AZDHS</a></span>
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<h2>Using child health records to map lead exposure</h2>
<p>My work is made possible because researchers can obtain confidential patient records, under strict regulations and oversight to ensure their confidentiality throughout analysis. These controls are mandated under <a href="https://www.hhs.gov/hipaa/for-individuals/guidance-materials-for-consumers/index.html">federal regulations</a> that were rightly instituted to protect people’s identities and health data pursuant to the 1996 Health Insurance Portability and Accountability Act, or HIPAA. </p>
<p>I started researching lead exposure hot spots in U.S. cities almost 15 years ago, well before thousands of kids were poisoned by lead in Flint. Pediatric exposure to lead results in permanent neurological effects – namely, reduced IQ and deficits in attention, learning and memory compared with nonintoxicated peers. These impacts <a href="https://www.who.int/news-room/fact-sheets/detail/lead-poisoning-and-health">are permanent</a>, so it is critical to identify and eliminate lead exposure sources before children are poisoned.</p>
<p>Because I did not have the resources to obtain and analyze millions of samples of soil, dust and water for lead, I turned to medical records. Children around the country have routine blood tests, and many of them include an assay for blood lead levels. I realized that if I could obtain those records, as well as each child’s age, test date and home address, I could map out the distribution of lead poisoning. </p>
<p>In an ideal world public health experts wouldn’t use maps based on kids who have already been permanently poisoned to find exposure sources. Nevertheless, 16,000 medical records later, I was able to produce a detailed block-by-block map of <a href="https://doi.org/10.1007/s10653-012-9474-y">blood levels in children</a> in Indianapolis.</p>
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<a href="https://images.theconversation.com/files/308531/original/file-20200105-11904-1id8b3c.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/308531/original/file-20200105-11904-1id8b3c.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/308531/original/file-20200105-11904-1id8b3c.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=412&fit=crop&dpr=1 600w, https://images.theconversation.com/files/308531/original/file-20200105-11904-1id8b3c.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=412&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/308531/original/file-20200105-11904-1id8b3c.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=412&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/308531/original/file-20200105-11904-1id8b3c.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=518&fit=crop&dpr=1 754w, https://images.theconversation.com/files/308531/original/file-20200105-11904-1id8b3c.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=518&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/308531/original/file-20200105-11904-1id8b3c.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=518&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Blood lead levels of children in Indianapolis, Indiana, for the period February 2002 to December 2008 (n = 12,431) for children between ages 0 and 5.99 years (area = 1,044 km2).</span>
<span class="attribution"><a class="source" href="http://dx.doi.org/10.12952/journal.elementa.000059">Filippelli et al, 2012.</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
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<h2>Pinpointing exposure sources and timing</h2>
<p>This approach led me and my colleagues to two major discoveries that have improved communities and shaped policy at the local and national levels. Neither of these insights could be used to implement solutions under the proposed secret science rule.</p>
<p>First, we found that the pediatric lead poisoning distribution patterns we identified from medical records <a href="https://doi.org/10.1007/s10653-012-9474-y">matched a rudimentary map</a> of patterns of legacy lead contamination – lead emitted over decades by sources such as leaded gasoline, lead-based paint and industrial emissions – that we constructed from separate research work on <a href="https://www.mapmyenvironment.com/">urban soil and dust</a>. This indicated that at least in Indianapolis, soil and contaminated dust generated from it was likely the major exposure mechanism for lead in children.</p>
<p>We were able to leverage that finding in some particularly contaminated neighborhoods where the EPA had previously carried out cleanups. Indeed, our work spurred the agency to reanalyze one of these poorly mitigated neighborhoods and reopen the cleanup over a <a href="https://www.epa.gov/newsreleases/epa-completes-cleanup-100-properties-american-lead-site-indianapolis-soil-sampling">much broader target area</a>.</p>
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<figcaption><span class="caption">Lead poisoning symptoms don’t appear until blood lead levels are high, so reducing exposure is the only effective way to prevent permanent damage.</span></figcaption>
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<p>Second, we were able to verify the source of seasonal variations in children’s blood lead levels. Through some basic atmospheric modeling, we identified seasonal dust generation as the main driver of this pattern. For example, when soil becomes drier for an extended period of time, it generates more dust that can be tracked into homes or blown into the air. If that soil happens to be contaminated with lead, the dust is also contaminated and becomes a <a href="https://doi.org/10.1289/ehp.7759">regional exposure source</a>.</p>
<p>After expanding this analysis to 10 different U.S. cities, we were confident enough to begin recommending to clinical networks that they take blood test dates into account. An August blood lead value could be double the level from a February test, so we believed it was important to consider timing in evaluating whether a child might be at risk of unsafe exposure. This led to the first such screening policy to be implemented around the timing of lead test results.</p>
<h2>Putting blinders on regulators</h2>
<p>Neither of these findings would have been possible without access to original, confidential patient medical records. For each patient we needed a specific home address and exact individual results from blood lead tests. These both are protected classes of personal information that must be kept confidential under federal regulations.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1201607312244387840"}"></div></p>
<p>I participated in 2011 in the EPA’s <a href="https://yosemite.epa.gov/sab/sabproduct.nsf/264cb1227d55e02c85257402007446a4/B1B17FB48ACEFE8D8525776D006C55CE/$File/ISA_FOR_LEAD.PDF">Integrated Science Assessment for Lead</a> review process, in which the agency reviewed papers and consulted experts to determine whether provisions in the Clean Air Act regulating airborne lead exposure were adequately protecting Americans. Regulators were particularly interested in the small-scale links between blood lead levels and known sources of lead from dust that our research was finding. Eventually, the agency <a href="https://www.epa.gov/newsreleases/epa-and-hud-announce-new-lead-dust-standards-protect-childrens-health">lowered acceptable standards for lead in dust</a> in 2019.</p>
<p>Childhood lead exposure is still a <a href="https://www.reuters.com/investigates/graphics/lead-water/en/">public health hazard of epidemic proportions</a> in some parts of the U.S., particularly cities. The potential sources are relatively well known: soil, dust and water. The challenge is that researchers don’t have adequate environmental measurements for these sources. Until we do, fine-scaled results revealed by human health data remain our best way to identify sources, and thus inform policies to protect children. </p>
<p>Now, under the secret science rule, EPA officials will have to pretend that this kind of research doesn’t exist, since the patient records that it draws on can’t be made public. There are ways to reverse this measure: Congress could repeal it under the <a href="https://www.eenews.net/stories/1063712743">Congressional Review Act</a>, or the Biden administration could refuse to defend it in the face of legal challenges. The slowest path would be conducting a new rule-making to rewrite it. </p>
<p>Until one of these things happens, I believe the Trump administration’s action will leave hundreds of thousands of children across the U.S. at risk of a lifetime of avoidable harm from lead poisoning and other types of pollution that researchers analyze using private medical data.</p>
<p>[ <em>Insight, in your inbox each day.</em> <a href="https://theconversation.com/us/newsletters?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=insight">You can get it with The Conversation’s email newsletter</a>. ]</p>
<p><em>This article has been updated to reflect finalization of the rule and possible next steps.</em></p><img src="https://counter.theconversation.com/content/128769/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Gabriel Filippelli receives funding from the Environmental Protection Agency (Environmental Justice Small Grants Program) and from the Indianapolis Foundation</span></em></p>The EPA has just adopted a rule that limits what kinds of science regulators can use in setting rules. A scholar explains how this shift could impede his work mapping child lead poisoning.Gabriel Filippelli, Professor of Earth Sciences and Director of the Center for Urban Health, IUPUILicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1195342019-07-10T07:33:34Z2019-07-10T07:33:34ZPaper tsunami: how the move to digital medical records is leaving us drowning in old paper files<figure><img src="https://images.theconversation.com/files/283467/original/file-20190710-44453-1t59hje.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">What to do with our old paper medical files now that records are going digital? As a recent Brisbane case demonstrates, not all files are heading straight for destruction.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/download/confirm/146735312?src=J5pcaY86GPfK_a6VfDdq1w-1-6&studio=1&size=medium_jpg">from www.shutterstock.com</a></span></figcaption></figure><p>The <a href="https://www.abc.net.au/news/2019-06-26/medical-files-dropped-on-busy-brisbane-road/11249460">recent case</a> of paper medical files from a Brisbane hospital found on a busy street highlights the need for secure, controlled disposal of medical records.</p>
<p>The files were said to be from out-patient clinics and contained patient names and their appointments, but not medical details. Now Queensland Health is investigating the circumstances of how the files came to be found in public, rather than being safely destroyed by a contractor.</p>
<p>So how are hospitals and clinics handling their old paper records as they move to electronic systems? How are they dealing with the tsunami of files that need to be safely disposed of?</p>
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Read more:
<a href="https://theconversation.com/the-cabinet-files-show-that-we-need-to-change-the-nature-of-record-keeping-91146">The Cabinet Files show that we need to change the nature of record-keeping</a>
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<p>Your medical records, whether paper or electronic, need to be kept while they’re relevant to your care, with restricted access to protect your privacy. But who decides when medical records are no longer needed? What happens then?</p>
<p>Governments at all levels have legislation for this. For instance, the <a href="https://www.health.qld.gov.au/__data/assets/pdf_file/0026/397223/qh-imp-280-1.pdf">Queensland health department specifies</a> what is destroyed and when, according to a schedule from <a href="https://www.forgov.qld.gov.au/schedules/health-sector-clinical-records-retention-and-disposal-schedule">Queensland State Archives</a>. This covers medical records in the public health care system in physical form (paper, photographs, film), in electronic form or a mixture of the two.</p>
<p>This, for example, says “records displaying evidence of clinical care to an individual or groups of adult patients/clients” should be kept “for ten years after last patient/client service provision or medico-legal action”. There are a number of exceptions relating to, for example, clinical trials, mental health and communicable diseases. For each exception, there is a specific time period of how long the file needs to be kept.</p>
<p>Queensland State Archives also advises on <a href="https://www.forgov.qld.gov.au/how-destroy-records">how records are to be securely destroyed</a>, either by shredding, pulping or burning.</p>
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Read more:
<a href="https://theconversation.com/our-healthcare-records-outlive-us-its-time-to-decide-what-happens-to-the-data-once-were-gone-81325">Our healthcare records outlive us – it's time to decide what happens to the data once we're gone</a>
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<p>Hospitals can contract commercial services to destroy paper files. But the document owner, in this case the hospital, is ultimately responsible for ensuring this is carried out legally. </p>
<p>The Royal Australian College of General Practitioners (RACGP) has established <a href="https://www.racgp.org.au/FSDEDEV/media/documents/Running%20a%20practice/Practice%20standards/4th%20edition/Standards-4th-edtion.pdf">practice standards</a> for GP clinics. These require the secure destruction (for instance, by shredding) of paper records before disposal.</p>
<p>So, hospitals and GP clinics need to develop and implement policies and procedures that state explicitly when and how medical records should be disposed of, and also keep a record of when that happens. </p>
<p>However, to determine whether an individual medical record among the vast quantities held has passed its “use by date” can be extremely resource-intensive for administrative staff. </p>
<p>This means the ultimate driver of paper record destruction is more likely to be the need to free up expensive office or storage space. It’s this sort of scenario that might eventually play out into records being accidentally or deliberately dumped wherever, whenever.</p>
<h2>The move towards digital records</h2>
<p>The Brisbane situation highlights the limitations of “business as usual” in relation to medical records, which includes paper records held in multiple locations, in hospitals, in GP clinics and with specialists.</p>
<p>Consider your own medical record “paper trail”, which may include files from hospital admissions, records held by your local doctor or other specialist, and results of blood tests and x-rays performed elsewhere. </p>
<p>At both a personal and whole-of-population level, there are clearly numerous opportunities for unintended access to these physical documents. Centrally and securely stored electronic records can address this risk, and also carry a number of <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4394583/">other advantages</a>. </p>
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Read more:
<a href="https://theconversation.com/opting-out-of-my-health-records-heres-what-you-get-with-the-status-quo-100368">Opting out of My Health Records? Here's what you get with the status quo</a>
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<p>Privacy breaches relating to paper medical records are in part a function of a worldwide transition from a trusted familiar environment of paper records to electronic medical records.</p>
<p>This dramatically multiplies the volume of paper records needing to be destroyed — from only those that are “out of date” to every record that is scanned and made redundant.</p>
<p>The Brisbane case also highlights the sensitivity of medical records in all their forms, a factor also playing out in the <a href="https://www.myhealthrecord.gov.au/">My Health Record</a> debate.</p>
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<p>
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Read more:
<a href="https://theconversation.com/my-health-record-the-case-for-opting-out-99302">My Health Record: the case for opting out</a>
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<p>Who do we trust to keep our sensitive medical records safe? Should our trust be placed in the old paper records (part of the <a href="https://theconversation.com/my-health-record-the-case-for-opting-out-99302">the status quo</a>) or a <a href="https://theconversation.com/my-health-record-the-case-for-opting-in-99850">centralised electronic medical record</a>?</p>
<p>The Brisbane situation, by highlighting the limitations of paper records, certainly challenges notions of <a href="https://www.cambridge.org/core/journals/behavioural-public-policy/article/when-and-why-defaults-influence-decisions-a-metaanalysis-of-default-effects/67AF6972CFB52698A60B6BD94B70C2C0">trusting the familiar and favouring the status quo</a>.</p>
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Read more:
<a href="https://theconversation.com/my-health-record-the-case-for-opting-in-99850">My Health Record: the case for opting in</a>
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<h2>So, what can we expect?</h2>
<p>Like all transitions of this scale, there are a range of costs involved in moving from paper to electronic medical records, one of which is the prospect of further paper record data breaches as mountains of redundant records are destroyed. However these transition costs need to be balanced against the <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4394583/">ultimate benefit</a> of electronic records. </p>
<p>Even accepting these benefits doesn’t necessarily mean people will automatically become more comfortable with electronic medical records, like My Health Record. For that to occur, people also have to overcome a <a href="https://theconversation.com/australians-trust-in-politicians-and-democracy-hits-an-all-time-low-new-research-108161">general lack of trust</a> in government.</p>
<p>However, <a href="https://www.behaviourworksaustralia.org/">our research</a> shows it is possible to encourage people to use online government services. By harnessing behavioural science, we have shown that providing customer support and promoting the benefits and ease of online services <a href="https://www.sciencedirect.com/science/article/pii/S0740624X18300984">helps the transition</a> from queuing and paper forms to using online services.</p>
<h2>Hope for the future</h2>
<p>In the rush to drag people to shiny new online platforms, this illustrates the simple act of talking people through the advantages and supporting their transition can address many of the psychological barriers to change.</p>
<p>Then, hopefully, we can see the end of paper medical records and services, and fewer paper records being dumped on the side of the road. As long as paper records exist they will be vulnerable to unauthorised access – either within a storage facility or in transit to destruction. However, each case of unauthorised access is dwarfed by the number of paper records successfully and securely destroyed, never able to be physically accessed again.</p><img src="https://counter.theconversation.com/content/119534/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Peter Bragge's research institution, Monash University, receives funding from the Victorian Department of Health Services, The Victorian Managed Insurance Authority, the Transport Accident Commission and Worksafe Victoria to support research activities. None of this funding goes directly to Peter Bragge. </span></em></p><p class="fine-print"><em><span>Gillian Oliver does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Patient information dumped on the side of the road in Brisbane recently has raised the issue of how hospitals and clinics manage their old paper records.Gillian Oliver, Associate Professor and Director, Centre for Organisational & Social Informatics, Monash UniversityPeter Bragge, Associate Professor, Healthcare Quality Improvement (QI) at Behaviour Works, Monash UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1002302018-07-24T07:50:57Z2018-07-24T07:50:57ZHow an ex-Barcelona player’s legal liver transplant is focusing attention on the human organ trade<figure><img src="https://images.theconversation.com/files/228720/original/file-20180722-142435-1khzq5x.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><p>In surely one of the most bizarre stories of recent weeks, former FC Barcelona president, Sandro Rosell, was forced to deny claims that he illegally purchased a human liver for ex-Barcelona defender Eric Abidal in 2012, after a report in <a href="https://www.elconfidencial.com/espana/2018-07-04/abidal-sandro-rosell-higado-compra-barcelona-trafico-organos_1587537/">Spanish newspaper El Confidencial</a> claimed police had intercepted phone calls of Rosell allegedly admitting the purchase. A statement by FC Barcelona <a href="https://www.sport-english.com/en/news/barca/official-statement-from-barcelona-on-eric-abidals-liver-transplant-story-6924473">flatly denied the allegations</a>, and pointed out that a Catalan court had shelved an investigation into the matter in 2017. Further form denials were issued by Abidal and the hospital in which he underwent surgery, while Spain’s National Transplant Organisation also <a href="http://www.espn.co.uk/football/barcelona/story/3568519/barcelonas-eric-abidal-followed-liver-transplant-protocol-study">came forward</a> to confirm that the operation was performed in accordance with the law.</p>
<p>In this case it appears clear that the transplant was legal, but the incident does shine a spotlight on commercial organ transplantation and the murky worldwide black market for human organs. But what is this trade and how often does it happen?</p>
<h2>What is transplant commercialism?</h2>
<p>Transplant commercialism involves the buying, selling, or otherwise commodifying of human organs. It is recognised as a serious crime in the vast majority of countries, with the <a href="https://www.theguardian.com/society/2015/may/10/kidneys-for-sale-organ-donation-iran">notable exception of Iran</a>.</p>
<p>In practice the term covers a broad spectrum of behaviours. The most troubling cases involve people being trafficked so their organs can be removed. Victims may be held against their will, forced to undergo medical tests, and ultimately operated on without their consent. Thankfully there have not yet been substantiated cases of this occurring in the UK, but we know it happens <a href="https://www.bbc.co.uk/news/health-38722052">elsewhere</a>.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/228870/original/file-20180723-189329-6r5rcy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/228870/original/file-20180723-189329-6r5rcy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=358&fit=crop&dpr=1 600w, https://images.theconversation.com/files/228870/original/file-20180723-189329-6r5rcy.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=358&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/228870/original/file-20180723-189329-6r5rcy.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=358&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/228870/original/file-20180723-189329-6r5rcy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=450&fit=crop&dpr=1 754w, https://images.theconversation.com/files/228870/original/file-20180723-189329-6r5rcy.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=450&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/228870/original/file-20180723-189329-6r5rcy.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=450&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Organ tourism is hard to track and even harder to stop.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-illustration/organ-transportation-concept-open-human-refrigerator-632646452?src=IlS9b5rxckOoYmL37XZMbg-1-26">shutterstock</a></span>
</figcaption>
</figure>
<p>More common is so-called “transplant tourism”, which sees patients travel abroad for transplants they might struggle to otherwise obtain quickly. Though illegal payments are not always involved – some might have an overseas relative willing to donate – these foreign trips should set off alarm bells.</p>
<p>The global reach of social media makes it increasingly easy for organs to be offered for sale online. Within two days of joining a Facebook group about organ donation, for example, I was messaged by a man in India offering to sell me his kidney.</p>
<p>It should surprise no one that payment for organ “donation” is often associated with the coercion and exploitation of those in poverty. The <a href="http://files.sld.cu/trasplante/files/2010/08/declaracion-estambul.pdf">Declaration of Istanbul</a>, endorsed by transplant organisations around the world, states clearly that trafficking and transplant tourism “violate the principles of equity, justice and respect for human dignity and should be prohibited”. There is an ongoing <a href="https://jme.bmj.com/content/41/6/443.short">academic debate</a> surrounding the ethics of transplant commercialism, but its illegality is clearly established in the laws of most countries.</p>
<h2>An unknown frequency</h2>
<p>Given that lawbreakers rarely report their own crimes, an accurate picture is difficult to ascertain, but it has <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/j.1600-6143.2008.02200.x">been estimated</a> that 5-10% of worldwide organ transplants involve payments. UK figures suggest that <a href="https://nhsbtdbe.blob.core.windows.net/umbraco-assets-corp/4331/79th-meeting-board-report.pdf">nearly 400 patients</a> have received a transplant overseas in the last 16 years, although some of these may have been perfectly legal.</p>
<p>It is also possible that in the UK some donations involve illicit, under-the-table rewards. There are <a href="https://www.hta.gov.uk/sites/default/files/Guidance%20for%20Transplant%20Teams%20and%20Independent%20Assessors.pdf">safeguards</a> in place to counter this and the <a href="https://www.legislation.gov.uk/ukpga/2004/30/contents">Human Tissue Act 2004</a> makes this unequivocally illegal. But once again it is difficult to prove anything: if a grateful recipient buys their donor a new car some months after a transplant, who can draw the line between deferred payment and honest generosity?</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/228719/original/file-20180722-142405-o9bk42.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/228719/original/file-20180722-142405-o9bk42.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/228719/original/file-20180722-142405-o9bk42.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/228719/original/file-20180722-142405-o9bk42.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/228719/original/file-20180722-142405-o9bk42.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/228719/original/file-20180722-142405-o9bk42.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/228719/original/file-20180722-142405-o9bk42.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Purloined organs can fetch a pretty penny on the black market.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/kidney-transplant-surgery-illegal-transplantation-human-1044717916?src=7HXBa_CIKKh72wbZjQzCdQ-1-73">shutterstock</a></span>
</figcaption>
</figure>
<p>Inevitably human organs are sometimes in limited supply, so patients on long waiting lists can be tempted to pay for an organ abroad. But when they return to the UK requiring follow up care their doctors will generally have their suspicions. Most medical professionals feel <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/ajt.13245">bound by patient confidentiality</a> and do not report their suspicions, but this eliminates one of the few potential methods of detecting and prosecuting this murky underworld. The illegal organ trade is complex and illusive, and without doctors reporting cases it will likely remain so.</p><img src="https://counter.theconversation.com/content/100230/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Greg Moorlock is a member of the European Society of Transplantation ELPAT Working Group on Living Organ Donation</span></em></p>I joined a Facebook group about organ donation. Within two days an Indian man offered to sell me his kidney.Greg Moorlock, Senior Teaching Fellow, University of WarwickLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/747462017-03-30T04:26:51Z2017-03-30T04:26:51ZYes, your doctor might Google you<figure><img src="https://images.theconversation.com/files/162815/original/image-20170328-21238-1st69x0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Information doctors find out about you online may affect your treatment. But not all of it is accurate or relevant.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/download/confirm/396554131?src=AAENpp9H44G_IOvn0EoG1g-1-83&size=medium_jpg">from www.shutterstock.com</a></span></figcaption></figure><p>When we think about Google and health, we usually think about patients <a href="https://theconversation.com/dr-google-probably-isnt-the-worst-place-to-get-your-health-advice-73835">searching</a> online for health information. But you may be surprised that some doctors Google you.</p>
<p>An Australian survey of how doctors use social media found about <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4275505/?report=classic">16%</a> (about one in six) had searched for online information about a patient, with roughly similar results from studies in the <a href="https://www.ncbi.nlm.nih.gov/pubmed/21706268">US</a> and <a href="https://www.ncbi.nlm.nih.gov/pubmed/?term=Do+emergency+physicians+and+medical+students+find+it+unethical+to">Canada</a>. </p>
<p>This raises several ethical concerns. For instance, what if your doctor’s search through your Facebook, blog or Twitter feeds revealed aspects about your lifestyle, like drug or alcohol use, you didn’t tell your doctor directly? What if that information influenced your access to surgery?</p>
<h2>Why doctors Google patients</h2>
<p>Some doctors say they Google their patients to gather more information about them or to <a href="http://psycnet.apa.org/journals/pro/41/2/160/">discover the “truth”</a>. Armed with that information, they say they can better care for their patients and improve their health.</p>
<p>For instance, a doctor may see a patient with depression’s online account of wanting to end his life; the doctor might see that as an opportunity to take action and <a href="https://www.ncbi.nlm.nih.gov/pubmed/?term=%22social+networking+sites%3A+a+clinical+dilemma%3F%22">prevent a bad outcome</a>. Or a doctor may find out about adolescent <a href="https://www.ncbi.nlm.nih.gov/pubmed/21939873">high-risk behaviour</a> they are not likely to talk about, like drug abuse or risky sexual behaviour, and see that as an opportunity to protect them from harm.</p>
<p>Alternatively, some doctors Google their patients <a href="https://www.ncbi.nlm.nih.gov/pubmed/20235775">out of curiosity, voyeurism or simply habit</a>.</p>
<p>This raises the issue of when a legitimate professional concern tips over into behaviour that’s unnecessary and “creepy”. </p>
<p>To Google or not is an issue doctors admit to grappling with. In an Australian survey, when doctors were asked if it was appropriate for doctors to look up publicly available information about a patient, <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4275505/?report=classic">almost 43% said no and around 40% were unsure</a>.</p>
<h2>Breaching trust</h2>
<p>When a doctor searches online for information about a patient without consent, their role changes from someone who works with the patient to someone who observes and spies on them. From a patient’s viewpoint, this is likely to <a href="https://theconversation.com/power-and-duty-is-the-social-contract-in-medicine-still-relevant-3941">destroy trust</a> between the two, as it shows a lack of respect.</p>
<p>Patients can also be directly harmed when doctors act on information they find online. If a doctor sees an online photo of a patient waiting for a liver transplant drinking alcohol when they shouldn’t be, <a href="http://www.mygeartools.com/articles/is-your-doctor-spying-on-your-tweets-social-media-raises-medical-privacy-questions/">patients risk missing out on receiving a new liver</a>. </p>
<p>Then there’s the issue of whether the information is recent or relevant. In the case of the liver transplant dilemma, we might not know when the photo of the liver transplant patient was taken; it is not proof the patient is drinking now.</p>
<p>Doctors, like the rest of us, also cannot be sure online information is accurate. For instance, more than 50% of adolescents <a href="https://www.ncbi.nlm.nih.gov/pubmed/21939873">admit posting false information</a> on social media.</p>
<h2>To act or not to act?</h2>
<p>Deciding to search for information about their patients online is not the end of the matter. Doctors also need to decide whether to admit Googling and whether to act on the information they find.</p>
<p>Doctors are legally required under <a href="https://aifs.gov.au/cfca/publications/mandatory-reporting-child-abuse-and-neglect">mandatory reporting laws</a> to report information they have viewed relating to child abuse and neglect. But if they act on inaccurate information, that can harm the patient and others. If they don’t act on the information they find, they could be liable for not trying to protect the patient.</p>
<p>In the end, doctors need to satisfy themselves that they have good reason to take action (or not take action) based on weighing up the likely benefits and harms.</p>
<p>While there may be some justification for looking at patient information online when it relates to child safety, for adult patients, it’s a different matter. For adults, it would be easier and more respectful to just ask them.</p>
<h2>What can we do?</h2>
<p>Regardless of any ethical concerns, how realistic is it for doctors to stop Googling their patients? Using Google is so common (globally, we use it to make <a href="http://www.internetlivestats.com/google-search-statistics/">3.5 billion</a> searches a day) that it has become the default way we <a href="https://theconversation.com/whats-the-point-of-education-if-google-can-tell-us-anything-44441">find out information</a> online. <a href="https://www.ncbi.nlm.nih.gov/pubmed/21939873">Many doctors</a> also don’t think Googling a patient is an invasion of privacy.</p>
<p>Patients should be aware that their doctor can see and use the information they put online. To safeguard their privacy, patients can adjust their privacy settings and be careful of what they post.</p>
<p>Perhaps there should be policy on the need for doctors to be open about Googling their patients. And, before they act on any information, patients should have an opportunity to <a href="http://www.mygeartools.com/articles/is-your-doctor-spying-on-your-tweets-social-media-raises-medical-privacy-questions/">refute or explain that information</a>.</p>
<p>If this doesn’t happen, we will see an continual erosion of trust between doctor and patient.</p><img src="https://counter.theconversation.com/content/74746/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Merle Spriggs is also Honorary Research Fellow at Murdoch Childrens Research Institute.</span></em></p>When we think about Google and health, we usually think about patients searching online for health information. But you may be surprised to hear that doctors Google you.Merle Spriggs, Research Fellow at the Children's Bioethics Centre, The University of MelbourneLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/698392016-12-08T15:32:23Z2016-12-08T15:32:23ZWhy researchers should get the same client confidentiality as doctors<figure><img src="https://images.theconversation.com/files/149243/original/image-20161208-31379-1w2vxjp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">shutterstock</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/download/confirm/348292883?src=&id=348292883&size=medium_jpg">Shutterstock</a></span></figcaption></figure><p>Social scientists routinely promise confidentiality to those who participate in their research. They tell participants that they will not inform anyone else about their involvement with the research or they will not reveal what they have said. This is done to encourage and ensure frank participation. But while ethics committees and review boards often mandate these promises of confidentiality, it is rare for such bodies, or universities, to speak up for researchers when they are faced with demands that they break confidentiality.</p>
<p>Take the ongoing struggle over <a href="http://www.bbc.co.uk/news/uk-northern-ireland-27238797">the Boston College Tapes</a>, for example. The tapes were the result of a project to create an oral history of the Troubles in Northern Ireland. In order to interview a number of former members of loyalist and republican paramilitaries about their involvement in the violence of the past, researchers promised that what was said would only be released posthumously. </p>
<figure class="align-left ">
<img alt="" src="https://images.theconversation.com/files/149244/original/image-20161208-31379-h3wmni.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/149244/original/image-20161208-31379-h3wmni.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/149244/original/image-20161208-31379-h3wmni.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/149244/original/image-20161208-31379-h3wmni.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/149244/original/image-20161208-31379-h3wmni.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/149244/original/image-20161208-31379-h3wmni.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/149244/original/image-20161208-31379-h3wmni.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Sensitive history: Republican mural on Falls Road, Belfast, 2009.</span>
<span class="attribution"><a class="source" href="https://www.flickr.com/photos/supermac/3577901063/in/photolist-6saLCg-6saFkn-6seJY3-6saEsX-6seKP3-6seD5o-6seLDq-6seEK1-6seJ8b-6seHiy">Supermac1961/Flickr</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<p>Nevertheless, <a href="https://www.theguardian.com/uk-news/2016/apr/25/boston-college-ordered-by-us-court-to-hand-over-ira-tapes">legal action taken by</a> the Police Service of Northern Ireland could <a href="https://www.theguardian.com/uk-news/2016/apr/28/boston-college-opposes-legal-moves-to-seize-ira-tapes">force Boston College</a> – where the tapes are held – to release interviews with former IRA volunteer turned academic, <a href="http://thepensivequill.am/2014/05/bias-bona-fides-boston-tapes-interview.html">Anthony McIntyre</a>, who was also a lead researcher on the project. The PSNI says it wants the tapes in relation to the notorious 1972 IRA murder of Jean McConville. The subpoena is currently <a href="http://www.bbc.co.uk/news/uk-northern-ireland-37409521">being challenged</a> by McIntyre. </p>
<p><a href="https://www.timeshighereducation.com/comment/letters/inescapable-burden-of-guilty-knowledge/418834.article">Arguably those involved</a> ought to have made better provisions or recognised the limited nature of any guarantee they were in a position to offer. Nevertheless, it is common to provide research participants with such assurances, and those involved with this project were acting in good faith; like many researchers they believed the data they were collecting would be protected. </p>
<p><a href="http://www.sciencemag.org/news/2016/11/canadian-researcher-legal-battle-keep-her-interviews-confidential">A comparable case</a> now seems to be underway in Canada. As part of her doctoral research, Marie-Ève Maillé interviewed a large number of individuals affected by the construction of a wind farm in Arthabaska, Quebec. As is routine, those she spoke to were assured that their remarks would be kept confidential. When some of the area’s residents started legal action against the company constructing the farm, Maillé offered to appear as a expert witness. The company responded by requesting access to her research data – interview records and/or transcripts – and the judge in the case ruled in their favour.</p>
<p>It seems, then, that the promises routinely made by social scientists have little in the way of legal support. The same could arguably be said about confidentiality in medical practice. The difference is that the notion of confidentiality is supported and defended by professional bodies and, on that basis, it is widely recognised and respected. Nevertheless, a judge can order a healthcare professional to break a patient’s confidence, just as they can compel testimony from any other individual. There is no greater degree of legal protection; there is merely recognition that the confidentiality offered by healthcare professionals should not be compromised without good reason.</p>
<h2>Undermining the truth</h2>
<p>A similar approach <a href="http://www.socresonline.org.uk/21/4/7.html">should be taken</a> in the case of social scientists. The reason that this is not currently the case is, <a href="http://www.socresonline.org.uk/21/4/7.html">I have argued</a>, that we have failed to realise that the ethics of social scientific research is a form of professional ethics, and therefore comparable to the ethics espoused by other professionals, particularly those who work in healthcare.</p>
<p>The reason medical and legal professionals offer confidentiality to their patients and clients is connected to the nature of their work; it is a professional commitment that allows doctors and lawyers to better meet the needs of patients and clients. It is adopted because it allows professionals to do their job. </p>
<p>The promise of confidentiality is not just a commitment made by particular individuals, but something collectively promised by the profession as a social institution. The trust we place in the probity of individual professionals is also directly linked to the confidence we have in the profession as a whole. If confidentiality is regularly compromised by legal order, then that confidence will rapidly be undermined.</p>
<p>A similar point can be made with regard to social science researchers. Promising confidentiality to research participants is a way of ensuring they are in a position to tell the truth, without reservation or fear of repercussions. For example, a social scientist who is conducting research on what it is like to work in a particular factory will get different responses if the confidentiality of their participants is assured as opposed to them thinking that their bosses will learn what they have to say.</p>
<figure class="align-right ">
<img alt="" src="https://images.theconversation.com/files/149107/original/image-20161207-18053-ngtnbr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/149107/original/image-20161207-18053-ngtnbr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=401&fit=crop&dpr=1 600w, https://images.theconversation.com/files/149107/original/image-20161207-18053-ngtnbr.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=401&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/149107/original/image-20161207-18053-ngtnbr.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=401&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/149107/original/image-20161207-18053-ngtnbr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=504&fit=crop&dpr=1 754w, https://images.theconversation.com/files/149107/original/image-20161207-18053-ngtnbr.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=504&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/149107/original/image-20161207-18053-ngtnbr.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=504&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Safe space.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/pic-529366369/stock-photo-two-bankers-are-analyzing-banking-operations-by-using-paper-documents-with-important-confidential-information-and-tablet-computer-while-are-sitting-in-informal-atmosphere-near-screen-with.html?src=XHdoHTe-2kSc7pa1dCEUaA-1-11">Shutterstock</a></span>
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</figure>
<p>Like the legal challenge currently being faced by Maillé, this example is less grandiose than that of the Boston College Tapes. Nevertheless, the larger point is the same: it would not be possible for researchers to do this kind of work were they unable to provide participants with assurances about the confidential nature of their contributions. </p>
<p>Confidentiality has a vital role to play in production of sound social scientific research. Of course, once it is promised, maintaining confidentiality becomes an important ethical commitment. Nevertheless, it is first and foremost a methodologically principle – something that is offered in the interests of good social science. </p>
<p>There is a distinct risk that promises of confidentiality are only viable when little is at stake and as soon as it matters, researchers will no longer be able to protect those who participated. </p>
<p>Writing about the challenges of conducting research in peace and conflict studies, John Brewer, an ex-president of the British Sociological Association, <a href="http://mio.sagepub.com/content/9/2059799116630657.long">suggested that researchers forge a covenant</a> with their research participants. It is a good suggestion, but such a covenant is not a matter for researchers alone. </p>
<p>It will need to be given the same level of respect accorded to the ethical commitments healthcare professionals offer to their patients. In medical practice, confidentiality is not inviolable, but it is rarely transgressed without a high justificatory bar being met. The same kind of standard should be applied to social science researchers.</p><img src="https://counter.theconversation.com/content/69839/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Nathan Emmerich is affiliated with the Research Ethics Group of the Academy of Social Sciences. The views expressed here are his own and may not reflect those of the Research Ethics Group or its members. </span></em></p>Promises made by researchers to participants to elicit the truth may not be worth the paper their written on if the courts can bulldoze though them.Nathan Emmerich, Visting Research Fellow, Queen's University BelfastLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/665572016-11-07T19:05:14Z2016-11-07T19:05:14ZShould family members of those with mental illness have access to their health information?<figure><img src="https://images.theconversation.com/files/144306/original/image-20161102-27224-5e3pln.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Medical law in Australia is based on the principle of patient autonomy. </span> <span class="attribution"><span class="source">from shutterstock.com</span></span></figcaption></figure><p>The <a href="http://www.abc.net.au/news/2015-07-03/crows-coach-phil-walsh-allegedly-murdered-son-charged/6591832">tragic death of former Adelaide Crows’</a> coach Phil Walsh, killed by his son Cy suffering from a mental illness, has highlighted the difficulties faced by families of those with mental health issues. </p>
<p>Phil Walsh’s wife Meredith emphasised her family’s struggle under current laws in accessing information to support their son. She <a href="http://www.abc.net.au/news/2016-09-28/cy-walsh-found-not-guilty-due-to-mental-incompetence/7884062">called for the law to be changed</a> to allow families better access to treatment information.</p>
<p>Her call echoes pleas made by families of <a href="http://www.abc.net.au/news/2016-01-15/alma-street-clinic-deaths-inquest-finds-poor-communication/7091416">five patients</a> who took their own lives following treatment at the Alma Street Centre in Western Australia. </p>
<p>The 2015 <a href="http://www.coronerscourt.wa.gov.au/_files/Nicholls-Diver%20finding.pdf">coronial inquest into their deaths</a> revealed family members caring for them had insufficient information about their condition, medication regime, factors that may indicate a risk of relapse, and when they should reengage with the mental health system. </p>
<p>The coroner recommended policies be developed for Carer’s Plans, that contain this information, to be provided to family members or carers. </p>
<p>Such cases support the argument the law should allow better communication between health professionals, families and <a href="http://www.austlii.edu.au/au/legis/vic/consol_act/cra2012197/s3.html">carers</a>, even if this impacts on patients’ confidentiality.</p>
<h2>Duty of confidentiality</h2>
<p>Australia’s medical law is based on the principle of autonomy. A person becomes the sole decision maker about their medical treatment when he or she acquires capacity. This is achieved at about the age of 16, although a person may – temporarily or permanently – lose capacity due to mental illness or impairment.</p>
<p>The law considers all medical records confidential; and mental health records are particularly sensitive. Under the autonomy principle, only the patient can decide who has access to their medical information. </p>
<p>Health professionals <a href="http://www.medicalboard.gov.au/Codes-Guidelines-Policies/Code-of-conduct.aspx">have a duty to respect</a> this. Depending on the circumstances, breaching confidentiality can be a <a href="http://www.austlii.edu.au/au/legis/vic/consol_act/mha2014128/s346.html">criminal offence</a>; or can result in disciplinary action, a privacy complaint or <a href="http://www.austlii.edu.au/au/other/lawreform/ALRCDP/2007/72.html#56">civil (non-criminal) court proceedings</a>.</p>
<p>The intention behind the duty is ethically sound. But it can create obstacles where care is provided to a loved one with mental illness. As the 2015 inquiry found, family members providing care <a href="http://www.mentalhealth.wa.gov.au/mentalhealth_changes/Stokes_Review.aspx">must be given</a> information about their loved one’s condition, the signs of relapse and what might trigger relapse. </p>
<p>Such information is necessary to minimise the risk of harm to the patient, or in rare cases, to a family member or carer. A <a href="https://www.mja.com.au/journal/2007/186/6/homicide-during-psychotic-illness-new-south-wales-between-1993-and-2002">New South Wales review</a> found out of 93 homicides committed by those suffering an episode of psychotic illness between 1992 and 2002, only nine victims were strangers. The rest were family members or close associates.</p>
<p>There are <a href="http://www.austlii.edu.au/au/other/lawreform/ALRCDP/2007/72.html#57">exceptions to the duty of confidentiality</a>, such as where the patient has consented to disclosure or where there is a serious and imminent risk to the safety of a person. </p>
<p>However, in some cases, the health professional may not have identified an imminent risk; which could happen if the patient has disengaged with treatment, unknown to the family or carers.</p>
<h2>Mental health policy</h2>
<p>Over the past 30 years, mental health policy has moved from institutional to community care. Consequently, greater demands have been placed on families and carers to support those with mental illness. The support may include providing accommodation, monitoring medication or taking the patient to receive treatment.</p>
<p>In recognition of the growing role of families and carers, the <a href="http://www.health.gov.au/internet/main/publishing.nsf/Content/mental-pubs-n-servst10">National Standards for Mental Health Services</a> now <a href="http://www.health.gov.au/internet/main/publishing.nsf/Content/CFA833CB8C1AA178CA257BF0001E7520/%24File/serv3.pdf">specify carers should be</a> actively involved in the development, planning and delivery of services. This standard is reflected in the principles that guide the mental health legislation of each state and territory.</p>
<p>Within recent mental health reforms, health professionals <a href="http://www.austlii.edu.au/au/legis/nsw/consol_act/mha2007128/s78.html">must now notify nominated people</a> of significant events in patients’ treatment, such as discharge from a mental health facility. In most states and territories, families or carers must be involved in <a href="http://www.austlii.edu.au/au/legis/nsw/consol_act/mha2007128/s79.html">discharge planning</a> and given treatment information.</p>
<p>In a <a href="http://www.austlii.edu.au/au/cases/nsw/NSWSC/2015/1168.html">recent case in New South Wales</a>, the court accepted a public hospital had a duty when granting leave to an involuntary patient, at risk of attempting suicide, to provide clear advice and instructions to his parents. This duty is consistent with current mental health legislation. </p>
<p>The limitation of mental health legislation is that, in most states and territories, it only applies to public patients and those admitted to some private, psychiatric hospitals. </p>
<p>Most general practitioners and private health professionals remain under a duty not to engage with families and carers unless an exception applies. There is no clear exception allowing all health professionals to give families and carers information to assist with a loved one’s care.</p>
<h2>Getting the balance right</h2>
<p>The law must achieve the correct balance between autonomy and protecting the patient’s and carer’s interests. Not all family and carer relationships are positive, so there is definitely a need to protect confidentiality in these cases.</p>
<p>However, the current <a href="http://www.austlii.edu.au/au/other/lawreform/ALRCDP/2007/72.html#56">laws are too complex</a>, and may <a href="http://www.alrc.gov.au/publications/13.%20Overview%3A%20Interaction%2C%20Inconsistency%20and%20Fragmentation/costs-inconsistency-and-frag">impede health professionals</a> from using existing exceptions to their confidentiality duty. </p>
<p>In Victoria, the law applying to public and some private mental health professionals gets the balance right. It should be extended to all Australian health professionals. Under this law, health professionals <a href="http://www.austlii.edu.au/au/legis/vic/consol_act/mha2014128/s346.html">have the authority to disclose confidential information</a> (including overriding the patient’s wishes) if:</p>
<ul>
<li><p>they deem the disclosure reasonably required by a carer of a patient to provide care, or to prepare to provide care, to the patient and </p></li>
<li><p>regard has been had to the patient’s views and preferences.</p></li>
</ul>
<p>Such a broad exception is necessary to allow health professionals to exercise their discretion within clear parameters, dependent on their knowledge of the patient’s social circumstances, care requirements and views. This could <a href="http://hansard.parliament.vic.gov.au/isysquery/8a6f3c32-0111-41aa-9f83-479790470c30/11/doc/">prevent failures in information</a> sharing that could cause detriment to the patient or others. </p>
<p>Having a clear authorisation would also alleviate the risk to health professionals of proceedings being taken against them for breaching confidentiality. </p>
<p>Some may argue such a change will diminish patients’ rights. However, it must be questioned if the current law has achieved the correct balance for patients such as Cy Walsh, whose once-confidential medical information has become public as his case proceeds through the courts.</p><img src="https://counter.theconversation.com/content/66557/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Rachel Yates is a member of the Mental Health Tribunal, Western Australia. This article was prepared by the author in her personal capacity. The views expressed in this article are the author's own and do not represent those of the Tribunal. The author has no personal involvement in the individual circumstances referred to in the article. </span></em></p>The law should allow greater communication between health professionals, families and carers even if this impacts on patients’ rights of confidentiality.Rachel Yates, Associate Lecturer, Curtin Law School, Curtin UniversityLicensed as Creative Commons – attribution, no derivatives.