Tag: justice

Bioethics Blogs

Mental Privacy in the Age of Big Data

By Jessie Ginsberg
Jessie Ginsberg is a second year student in the Master of Arts in Bioethics program and a third year law student at Emory University. 

A father stood at the door of his local Minneapolis Target, fuming, and demanding to speak to the store manager. Holding coupons for maternity clothes and nursing furniture in front of the manager, the father exclaimed, “My daughter got this in the mail! She’s still in high school, and you’re sending her coupons for baby clothes and cribs? Are you trying to encourage her to get pregnant?”
Target was not trying to get her pregnant. Unbeknownst to the father, his daughter was due in August.  
In his February 16, 2012 New York Times article entitled, “How Companies Learn Your Secrets,” Charles Duhigg reported on this Minneapolis father and daughter and how companies like Target use marketing analytics teams to develop algorithms to anticipate consumers’ current and future needs. Accumulating data from prior purchases, coupon use, surveys submitted, emails from Target that were opened, and demographics, a team of analysts render each consumer’s decision patterns into neatly packaged data sets tailored to predict their future buying choices. 

Flash forward to 2017, a time where online stores like Amazon dominate the market and cell phones are reservoirs of personal information, storing intimate details ranging from your location to your desired body weight to your mood. Furthermore, data analysis algorithms are more sophisticated than ever before, gobbling up volumes of information to generate highly specific and precise profiles of current and potential consumers.

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

Responsibility in the age of precision genomics

by Alexa Woodward

Alexa is a fellow in the Precision Medicine: Ethics, Policy, and Culture project through Columbia University’s Center for the Study of Social Difference. The following is her reflection on the ongoing discussion around the Precision Medicine Initiative that has been the subject of recent political, social, and popular media attention. A recent presentation by Sandra Soo-Jin Lee, PhD, from the Center for Biomedical Ethics at Stanford University spurred our multi-disciplinary discussion of some of the following themes.

What is normal, anyway?

Genetically speaking, that’s precisely the question that the Obama administration’s Precision Medicine Initiative (PMI) seeks to answer. In recruiting and collecting comprehensive genetic, medical, behavioral, and lifestyle data from one million Americans, the scientific and medical communities will be better able to understand what constitutes normal genetic variation within the population, and in turn, what amount of variation causes or contributes to disease or disease risk.[1] Using this data, researchers could potentially create tailored approaches for intervention and treatment of an incredible range of diseases.

The PMI has a secondary aim: to increase the representation of previously underrepresented populations in research – primarily African Americans and Hispanics/Latinos. Inclusion of these groups in research has been a challenge for decades, with lack of access, distrust in the medical and research systems, and institutionalized racism all playing exclusionary roles. More broadly, outside of the government initiative, the promise of precision medicine ultimately seeks to alleviate disparities by finding and addressing supposed genetic differences, and empowering people with information to take responsibility for their health.

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

Two Random Thoughts about Health Care Policy and Justice

I haven’t yet read the Senate Republicans’ draft health care bill, just out today.  Until I do I’m not going to comment about it directly.

The matter is a bioethics concern solely from the perspective of justice, really.  What is the wisest, most just policy?  And here one is forced, I think, into a fairly utilitarian assessment of what approach provides the best outcome for the country overall?  In that, we can allow for a “priority concern” for pool or relatively poor folks, allowing a weighting of factors in their favor.  In fact, I’m all for that.

But two thoughts.  First, I and others tend to argue that we should reform Medicare and Medicaid and not just leave them as they are, because to do so is to ratify their demise into bankruptcy or unaffordability.  That argument is open to two charges: that it assumes that forecasts of rapid demise are reliable, and that preserving the programs, in a sustainable form, favors future generations at the expense of the current ones.  On the latter, to wit:  Most people would agree that “my” (i.e., someone’s in general) duty to people close to them (like spouse, children) is greater than to a stranger.  But can we not say the same thing about generations?  Isn’t our duty to people already among us greater than, say, our envisioned duty to our grandchildren and great-grandchildren, even if they are ours and not someone else’s?  I suppose that one might argue that.

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

VACCINE LIABILITY IN EUROPE: A NEW DEVELOPMENT

By Alex Stein Yesterday, the European Court of Justice has issued an important ruling on vaccine manufacturers liability. N.W. et al. v. Sanofi Pasteur MSD, C‑621/15. This ruling triggered a hailstorm of criticism from different media outlets, including CNN. These outlets, … Continue reading

Source: Bill of Health, examining the intersection of law and health care, biotech & bioethics.

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 News

Senate Leaders Unveil Bill to Repeal the Affordable Care Act

June 22, 2017

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WASHINGTON — Senate Republicans, who have promised a repeal of the Affordable Care Act for seven years, took a major step on Thursday toward that goal, unveiling a bill to cut Medicaid deeply and end the health law’s mandate that most Americans have health insurance.

The bill would create a new system of federal tax credits to help people buy health insurance, while offering states the ability to drop many of the benefits required by the Affordable Care Act, like maternity care, emergency services and mental health treatment.

The Senate bill — once promised as a top-to-bottom revamp of the health bill passed by the House last month — instead maintains its structure, with modest adjustments. The Senate version is, in some respects, more moderate than the House bill, offering more financial assistance to some lower-income people to help them defray the rapidly rising cost of private health insurance.

… Read More

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NY Times

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Source: Bioethics Bulletin by the Berman Institute of Bioethics.

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

Stakes of Life: Science, states, policies, publics and ‘the first thousand days’ by Fiona C. Ross

Welcome back to the “First Thousand Days of LifeSomatosphere series. Here we continue to explore the ways that a global health initiative driven by new findings in epigenetics and neuroscience and by a reframing of theories about health and disease in terms of developmental origins shape ideas about (global) health and population futures, invigorate campaigns, and take form and settle in localized contexts. Understanding the links between science, biomedicine, policy, population, well-being and relationship as simultaneously both meshed and contingent, our series posits questions about what affordances and limitations lie in new modalities of understanding human illness and well-being. It examines how policy is made and with what effects for its recipients, how states are implicated in health and its others, what forms of the everyday materialize under the lens of new findings in epigenetics and epidemiology, what modalities of knowing emerge and how they settle with older forms, and how ethnography might contribute.

Describing the research programme driven by the Thousand Days research group at the University of Cape Town, I noted that,

The emergent field both synergises a range of disciplines in the bio- and social sciences and develops new sites of humanitarian intervention, reframing current debates about population, well-being and ‘the best interests of the child’ in newly biological ways. As these findings are taken up in policy and practice, we are witnessing the making of a social object with material effects’ (www.thousanddays.uct.ac.za).

Our project has explored that making, its prior conditions and its effects.  As Michelle Pentecost noted in her opening to the Somatosphere series, the framing ‘offers fertile ground for careful thought about contemporary concepts of life, life-giving and care, offering spaces for critically assessing not only how states and people understand and enable health and well-being but also how life is conceptualized by different disciplines.’  We have traced both the ways that medical and scientific knowledge about life come to be interpolated in everyday worlds and the ways that people engage with, respond to – or indeed, ignore and subvert – it as they grapple with the possibilities that reproductive worlds afford.

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

Using AI to Predict Criminal Offending: What Makes it ‘Accurate’, and What Makes it ‘Ethical’.

Jonathan Pugh

Tom Douglas

 

The Durham Police Force plans to use an artificial intelligence system to inform decisions about whether or not to keep a suspect in custody.

Developed using data collected by the Force, The Harm Assessment Risk Tool (HART) has already undergone a 2 year trial period to monitor the accuracy of the tool. Over the trial period, predictions of low risk were accurate 98% of the time, whilst predictions of high risk were accurate 88% of the time, according to media reports. Whilst HART was not so far been used to inform custody sergeants’ decisions during this trial period, the police force now plans to take the system live.

Given the high stakes involved in the criminal justice system, and the way in which artificial intelligence is beginning to surpass human decision-making capabilities in a wide array of contexts, it is unsurprising that criminal justice authorities have sought to harness AI. However, the use of algorithmic decision-making in this context also raises ethical issues. In particular, some have been concerned about the potentially discriminatory nature of the algorithms employed by criminal justice authorities.

These issues are not new. In the past, offender risk assessment often relied heavily on psychiatrists’ judgements. However, partly due to concerns about inconsistency and poor accuracy, criminal justice authorities now already use algorithmic risk assessment tools. Based on studies of the past offenders, these tools use forensic history, mental health diagnoses, demographic variables and other factors to produce a statistical assessment of re-offending risk.

Beyond concerns about discrimination, algorithmic risk assessment tools raise a wide range of ethical questions, as we have discussed with colleagues in the linked paper.

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 News

Michigan Health Chief Charged With Involuntary Manslaughter For Flint Water Crisis

June 14, 2017

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Chief Medical Executive Dr. Eden Wells will be charged with obstruction of justice. Four other officials, including the former Flint emergency manager and former director of public works, were also charged with involuntary manslaughter.

Lyon and Wells are the highest-ranking state officials to be charged in the crisis. The charges stem from an investigation led by Michigan’s attorney general.

“Mr. Lyon failed in his responsibilities to protect the health and safety of the citizens of Flint,” Michigan’s Attorney General Bill Schuette said at a press conference Wednesday.

… Read More

Image: By Ildar Sagdejev (Specious) – Own work, GFDL, https://commons.wikimedia.org/w/index.php?curid=5204599

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NPR

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Source: Bioethics Bulletin by the Berman Institute of Bioethics.

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

Have I Been Cheating? Reflections of an Equestrian Academic

By Kelsey Drewry
Kelsey Drewry is a student in the Master of Arts in Bioethics program at the Emory University Center for Ethics where she works as a graduate assistant for the Healthcare Ethics Consortium. Her current research focuses on computational linguistic analysis of health narrative data, and the use of illness narrative for informing clinical practice of supportive care for patients with neurodegenerative disorders.

After reading a recent study in Frontiers in Public Health (Ohtani et al. 2017) I realized I might have unwittingly been taking part in cognitive enhancement throughout the vast majority of my life. I have been a dedicated equestrian for over twenty years, riding recreationally and professionally in several disciplines. A fairly conservative estimate suggests I’ve spent over 5000 hours in the saddle. However, new evidence from a multi-university study in Japan suggests that horseback riding improves certain cognitive abilities in children. Thus, it seems my primary hobby and passion may have unfairly advantaged me in my academic career. Troubled by the implication that I may have unknowingly spent much of my time violating the moral tenets upon which my intellectual work rests, I was compelled to investigate the issue.



The study in question, “Horseback Riding Improves the Ability to Cause the Appropriate Action (Go Reaction) and the Appropriate Self-control (No-Go Reaction) in Children,” (Ohtani et al. 2017) suggests that the vibrations associated with horses’ movement activate the sympathetic nervous system, leading to improved cognitive ability in children. Specifically, children 10 to 12 years old completed either simple arithmetic or behavioral (go/no-go) tests before and after two 10 minute sessions of horseback riding, walking, or resting.

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

World Elder Abuse Awareness Day (#WEADD)

Kathy Greenlee,
Vice President for Aging and Health Policy

Why I Am Tired and Inspired

Kathy Greenlee is the Vice President for Aging and Health Policy at the Center for Practical Bioethics. She previously served as the U.S. Assistant Secretary for Aging and Administrator of the Administration for Community Living from 2009 to 2016. She will be the keynote speaker at “A Conference on Elder Rights and Protection” in Maui, Hawaii on June 15, 2017, World Elder Abuse Awareness Day.

The United Nations recognizes June 15 as World Elder Abuse Awareness Day. Started in 2006 by Elizabeth Podnieks of the International Network for the Prevention of Elder Abuse, the day has become an international opportunity to highlight the global problem of the abuse of older people.

During my tenure as U.S. Assistant Secretary for Aging, I had the honor of observing “World Day” in venues as exotic as the White House and the United Nations Headquarters in New York City. The problem of abuse of the aged is ubiquitous. It happens in every corner of the world, in every culture. Unfortunately and outrageously, it happens to one out of every 10 older adults in the United States.

The impact of abuse can be immediate, such as a sudden punch or a sexual assault. It can develop over time, as is the case with older adults who are neglected and allowed to languish, decline and die from the horrible circumstances that accompany the failure to receive care. Elder abuse can be caused by family members who strike out because of stress, anger or greed.

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.