Tag: data security

Bioethics News

How Apple, Google, and Other Tech Titans Aim to Shake Up the Way We Treat Disease

…[E]ven if Silicon Valley does deliver a useful project, the rest of the health care system will need time to catch up and work through issues such as patient privacy and data security.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Webinar Follow-Up: Big Data: Practical Solutions to Emerging Challenges for IRBs

I was quite excited to find out about the Big Data: Practical Solutions to Emerging Challenges for Institutional Review Boards (IRBs) webinar offered by PRIM&R. We are in the process of revising the section of our IRB application that deals with data security at my institution, and much of the data we work with certainly fits at least one of the 12 definitions of big data noted in this article that was provided as a background resource by the presenters. Our application revision process has raised many questions: What is the exact scope of the IRB’s responsibility for ensuring researchers’ responsible use of big data? How do we anticipate potential risks, and how do we convey these risks to researchers who may not initially see the potential harms that could arise from lack of attentiveness to ethical use of data?

The post Webinar Follow-Up: Big Data: Practical Solutions to Emerging Challenges for IRBs appeared first on Ampersand.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Guest Post: An Unfortunate State Of Affairs

Hilary Greaves, University of Oxford

Ashley Madison is an online extramarital dating service, running with the succinct subtitle “Life is short. Have an affair.” On July 20, 2015, the service announced that hackers had breached its data security defences, and obtained identifying details for the site’s 37 million members. In the months that have since past, the newspapers have reported case after case of divorce, resignation from top jobs, blackmail and, tragically, suicide.

Reactions to the Ashley Madison scandal have been many and various, ranging from unreserved sympathy for the ‘victims’ to the view that subscribers to Ashley Madison were stupid and ‘therefore’ deserve everything they get. My own reaction to any case of family trauma caused by infidelity is rather one of sadness: the sadness of witnessing suffering that seems, in many or most cases, so eminently avoidable.

I do not mean that the suffering would have been avoided if the straying parties had kept strictly to their vows of monogamy, true though that may be. What strikes me most is rather the frequency of the refrain that what really hurt the wronged partner was “not the sex, but the betrayal of trust”. This raises the urgent question of why the vows of monogamy were made in the first place. Of course, once a promise is made, (a) it should be kept and (b) one feels cheated, even humiliated, if one is on the receiving end of a promise-breaking; but those observations imply nothing about which promises are good ones to make.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Bioethics Deliberation and Education in Privacy and Progress

Last week, we continued our “Deliberation and Education” series with the blog post “Bioethics Deliberation and Education in Moral Science.” Each post in this series explores the role of deliberation and education in the recommendations issued by the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission). This fourth post in the series will examine deliberation and education in the Bioethics Commission’s fourth report: Privacy and Progress in Whole Genome Sequencing.

Privacy and Progress, released in October 2012, is the Bioethics Commission’s first self-directed project. Recognizing that the increased use of genetic testing in research and the clinic could yield both major advances in healthcare as well as ethical dilemmas, the Commission sought to study the pressing privacy and data access issues raised by the emergence of low cost whole genome sequencing. In Privacy and Progress, the Commission sought to outline many of the key issues surrounding how to reconcile an individual’s need for privacy, consent, and respect with the need for gathering data from many individuals to advance scientific discoveries for the common good.

The Bioethics Commission made 12 recommendations centered around several themes: strong baseline protections while promoting data access and sharing; data security and access to databases; informed consent; facilitating progress in whole genome sequencing; and public benefit. While none of the recommendations specifically included democratic deliberation or education, democratic deliberation was specifically cited as one of the principles the Commission included in their ethical framework for considering the implications of scientific advances. The guiding principles included: public beneficence, responsible stewardship, intellectual freedom and responsibility, democratic deliberation, and justice and fairness.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Asst. Director Dr. Adam Fried Takes Over as Ethics Editor for Clinical Psychology Publication

Fordham University Center for Ethics Education Assistant Director Dr. Adam Fried is the new editor of the ethics column of The Clinical Psychologist, a publication of the American Psychological Association (APA).

Fried’s first column on affirming ethical responsibilities, appeared in the Spring 2015, Volume 68, Issue 1 of the publication of Division 12 of the APA comprised of professional clinical psychologists.

“As column editor, I hope to discuss some of the most pressing ethical issues facing clinical psychologists and highlight particularly relevant and interesting research findings that inform practice, research and policy,” Fried wrote in his first column.

“Like my predecessors, I will attempt to give voice to those questions that may be most vexing. Some may relate to the changing landscape of the field of psychology, such as the appropriate use of new technologies (telehealth, social media, electronic communication). For example, what are the ethical implications of having a professional online presence and to what are the ethical questions associated with social media relationships with patients/clients. What are our ethical responsibilities to ensure data security in an increasingly digital, cloud-based world?”

Dr. Adam Fried is the Assistant Director of the Fordham University Center for Ethics Education, and the Director of the M.A. in Ethics & Society and Interdisciplinary Bioethics Minor.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

The Role of the IRB and Information Security

By Alexandra Shlimovich, webinar and publications specialist

On February 26, 2015, PRIM&R hosted a webinar titled Data Security Incidents: the Role of the IRB and Information Security. This topic was submitted by Teresa Doksum, PhD, MPH, and Sean Owen, CISP, CAP, CRISC, through the 2014 Call for Webinar Proposals. The potential for data security incidents in research with human subjects requires institutional review boards (IRBs) to work closely with information security experts to prevent these types of incidents and, if they do occur, to respond effectively to meet the strict reporting requirements. Topics covered during the webinar included reporting requirements and regulatory definitions, the roles of the IRB and information security department, and procedures to coordinate response to security breaches. Following a lively question-and-answer period at the conclusion of the webinar, Teresa and Sean kindly agreed to respond to some additional questions in writing to share with the readers of Ampersand.

1. Would you be willing to share your data security template?
Yes! You can download our guide with instructions for developing a detailed data security plan, along with sections you can copy/paste to create your own.

2. What procedures should be in place in case research data is confiscated by officials at international sites?
Study teams should always follow the local laws and contractual requirements of their international studies. If your data has been confiscated, you may be dealing with issues that are not security related, but potentially legal or contractual. If your computers or devices have been confiscated, you probably need to work with the customs or other authorities to get the devices released.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Trust and transparency must underpin technological change

Guest post by Dr Tony Calland, from the HRA Confidentiality Advisory Group, who spoke at the launch of the Council’s report on biological and health care data.

The UK is very fortunate to have a well constructed digital medical record system covering all of the 60 million citizens in these islands.

The computerised GP record holds many treasures, some yet undiscovered, recognising new associations between medical conditions or events which will enhance our understanding of disease and treatment.The Hospital Episodes Statistics (HES) database similarly holds a wealth of information. The power that can be generated by linking just these two is very considerable indeed, let alone linkage between many other databases, medical and non medical.

The value of this is twofold: it offers the ability to develop medical advances in diagnosis, treatment and innovation, as well as creating a huge commercial opportunity to increase the wealth of the country hopefully for the benefit of all.

However, to be able to utilise this national resource our communications and ethical governance need to be developed much further than currently, and move at the same speed as developments in medical science and computing technology.

Some members of the public will be aware of the use of medical records, the power of data linkage and the value of the pseudonymised medical record. However, the general understanding of the law, the protections applied to data and the process of information governance is poor, so there is a need for clear information and a public debate about what is and what is not acceptable to the data donors – that is the patients, or you and me.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Information Overload: The Era of Big Data

by Anita Pascoe, MS, CIP, Project Coordinator at Intermountain Healthcare

PRIM&R is pleased to share a post from Anita Pascoe, MS, CIP, a member of the PRIM&R Blog Squad for the 2014 Advancing Ethical Research (AER) Conference. The PRIM&R Blog Squad is composed of PRIM&R members who will blog here, on Ampersand, about the conference to give our readers an inside peek of what happened December 4-7 in Baltimore, MD.

On December 2, the day before I travelled from Salt Lake City, UT, to Baltimore, MD, to attend PRIM&R’s annual AER Conference, I broke a long standing promise to myself not to be suckered in by the latest technological fad and bought a new cell phone.

I had long resisted upgrading my old-fashioned “dumb phone” to its more desirable contemporary counterpart, the “smart phone.” However, I was informed by a hip mobile network sales person that my ancient flip-phone (and phone plan) were being phased out, and that I would not be able to renew my current plan going forward. I caved to the pressure of technology and salesmanship and came home with a brand new smart phone. The night before my flight, my twenty-something year old son took great pride in showing me the phone’s bell and whistles. Consequently, as I stepped off the airplane in Baltimore, I could not figure out how to answer a call from my husband, who was eager to know if I had landed safely. I had to call my son (hey, at least I knew how to dial out!)

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.