Tag: consent

Blog Posts (16)

October 22, 2015

Truth Telling In Medicine: Problems Old and New

<p style="font-size: 11.2px; line-height: 19.04px;">The issue of truth telling in medicine was a lively concern in the early days of modern medical ethics during the 1970’s. A new moral awareness had emerge that provided a clear moral rejection of the paternalistic approach taken in the physician-patient relationship that prioritized the traditional values of beneficence and non-maleficence over truth telling. Of course the key development that fueled this new moral perspective as well as the growing passion for medical ethics was the newfound sense that arose beginning in the 1960’s that patients with capacity have a fundamental right both to refuse unwanted treatment and give voluntary informed consent to treatments they were considering. It became obvious to students of medical ethics that if patients are to be able to exercise their right to give voluntary informed consent they must receive a full and accurate disclosure of the relevant information necessary for them to make a decision.</p> <p style="font-size: 11.2px; line-height: 19.04px;">Up to the early 1960’s, patients coming into the health care system very well may not have had an opportunity to give voluntary informed consent. Giving patients this opportunity just wasn’t part of the medical culture. In the early 1960’s it was common for oncologists to not disclose a diagnosis of cancer; by the late 1970’s there was almost universal agreement that full disclosure was the expectation. The full moral force of the principle of respect for patient autonomy happened relatively quickly, especially after the Belmont Report of 1978, which articulated the basic principles of medical ethics (though non-maleficence was subsumed under beneficence). There is no question that the physician-patient relationship has been evolving ever since with new levels of expectations and involvement of patients and their surrogates. There is now universal agreement that physicians are expected to be truthful to patients and accurately disclose their medical condition, including diagnosis and prognosis. Without this first basic step of truth telling in disclosing the medical facts to the patient about their condition, patients cannot exercise their right to express their preferences and wishes about medical treatment and care goals, and specially give voluntary informed consent to medical interventions to treat their condition.</p> <p><span style="color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.04px;"><strong>The Alden March Bioethics Institute offers a Master of Science in Bioethics, a</strong> </span><strong style="color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.04px;">Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our <a style="color: #000099; text-decoration: underline;" href="/Academic/bioethics/index.cfm">website</a>.</strong></p>
September 18, 2015

Heads Up: Plans for Head Transplant in 2017

<p><span style="font-size: 11.2px; line-height: 19.04px;">Frankenstein might want to weigh in on the release of a plan to provide a new body to a Russian man suffering from the rare muscle wasting disease, Werdnig-Hoffmann disease.  Commentators speculate that the proposed fusion of “Mr. Valery Spiridonov, a 30-year-old computer scientist from Vladimir, Russia” to a donor body is unlikely to ever actually be performed due to the <a href="http://www.medicalnewstoday.com">seeming unlikely odds</a> that the technical challenges could be overcome. Nonetheless, this extreme experimental undertaking raises important ethical questions about how far to press the boundaries of surgery. At one time, hemicorporectomy surgery was proposed as theoretically feasible, and though the suggestion was laughed at initially, this procedure has now been done successfully multiple times, albeit with significant risk of mortality. If we are indeed embarking on a new path where the head of one living being can be transplanted onto another, we must attend to the underlying values that we ascribe to mind, body, and personhood. <br /></span></p> <p><span style="font-size: 11.2px; line-height: 19.04px;"></span></p> <p><span style="color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.04px;"><strong>The Alden March Bioethics Institute offers a Master of Science in Bioethics, a</strong> </span><strong style="color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.04px;">Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our <a style="color: #000099; text-decoration: underline;" href="/Academic/bioethics/index.cfm">website</a>.</strong></p>
August 14, 2015

Living Organ Donations and Social Media

<p class="MsoNormal" style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;"><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;">Articles about improving organ donation registration rates by targeted social media campaigns have indicated that such efforts can successfully increase the numbers of individuals who elect to become organ donors </span>(Pena, 2014) (Cameron AM, 2013)<span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;">. While it is acknowledged that social medial is a useful medium for generating widespread recognition of the need for organ donation, concerns about whether or not donor registration actually increases donation rates is left unknown. Additional concerns about such registrations meet the standards for informed consent. These are productive conversations, and social media holds tremendous potential for conveying information and generating levels of interest in topics at a ‘viral’ level.</span></p> <p class="MsoNormal" style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;"><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;">Discussions up to this point seem to focus on donation after death, or in the context of imminent death. What has not been robustly discussed is the role of social media in the role of live organ donation. How should transplant programs view the relationship of acquaintances that begin on social media in the context of seeking information or support related to organ donation? Decisions to donate a solid organ, such as a kidney, ought not to be undertaken lightly, and perhaps the screening process will weed out donors with ambivalent intent or poor understanding of what they have offered a recipient. Given that concerns about informed consent have been noted in prior studies, it seems prudent to exercise added caution when approving donation transactions initiated via social media outlets.</span></p> <p class="MsoNormal" style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;"><span style="color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.0400009155273px;"><strong>The Alden March Bioethics Institute offers a Master of Science in Bioethics, a</strong> </span><strong style="color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.0400009155273px;">Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our <a style="color: #000099; text-decoration: underline;" href="/Academic/bioethics/index.cfm">website</a>.</strong></p>
May 5, 2015

Bioethics Commission Recommends Engaging Stakeholders to Address Stigma Associated with Impaired Consent Capacity

In Gray Matters: Topics at the Intersection of Neuroscience, Ethics, and Society (Gray Matters, Vol. 2), the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) explored capacity and the consent process as one of three topics that illustrate some of the ethical and societal tensions that surround rapidly advancing neuroscience research and its […]
February 25, 2015

Obama’s Precision Medicine Plan and the New American National Biobank

<p class="MsoNoSpacing" style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;"><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;">In the past State of the Union address, Obama announced his precision medicine initiative involving the creation of a new, <a href="http://news.sciencemag.org/biology/2015/01/obama-precision-medicine-plan-would-create-huge-u-s-genetic-biobank">national level biobank</a>.</span></p> <p class="MsoNoSpacing" style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;"><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;">Biobanks collect biological samples (e.g., DNA, cells, tissues, blood) and health and lifestyle information (e.g., disease information, smoking habits). By collecting it once, biobanks store biosamples and information such that they can be used as new biomarkers are discovered. As the samples are shared with others, biobanking research offers a novel research platform to perform large-scale, epidemiological studies in order to associate genotypic or biological information with healthand disease. Many nations have made significant investments into biobanking research creating national level biobanks such as the U.K. Biobank, which has half a million samples, and the Icelandic biobank called deCode Genetics.</span></p> <p class="MsoNoSpacing" style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;"><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;">Obama’s goal is to have at least <a href="http://www.sciencemag.org/content/347/6224/817.summary">1 million American volunteers</a> enroll in the biobank which will aim to conduct longitudinal studies examining genes, health and the environment. Collecting these many samples may not be so straightforward concluded a panel of experts at a recent workshop at the <a href="http://www.sciencemag.org/content/347/6224/817.summary">National Institutes of Health</a>. Several scientific and logistical issues were discussed. What types of diseases will be studied? Who will have access to the data? Who will be recruited? Will samples from other biobanks be incorporated into the precision medicine initiative? Yet with the many scientific and logistical issues, there are numerous ethical issues including informed consent, commercialization, and the return of results that must be given due consideration.</span></p> <p><strong style="color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.0400009155273px;">The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our <a style="color: #000099; text-decoration: underline;" href="http://www.amc.edu/Academic/bioethics/index.cfm">website</a>.</strong><span style="color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.0400009155273px;"> </span></p>
January 6, 2015

Cassandra C: Right to refuse treatment or protecting a minor*

by Craig Klugman, Ph.D.

In Connecticut, a 17-year-old girl is being kept in a hospital room under court order. She is restrained to her treatment bed when she is given chemotherapy that neither she nor her mother want.…

November 2, 2014

Is it Ethical to give Ebola-Sufferers a Placebo?

<p style="line-height: 19.0400009155273px;"><span style="line-height: 19.0400009155273px;">Recently prominent bioethicists have voiced disagreement over whether it could be ethical to test experimental Ebola vaccines in placebo-controlled randomized trials.  Such trials would involve taking a group of people currently infected with Ebola and randomizing half of them to an arm that receives the experimental vaccine (plus, let us assume, the best current standard of care for Ebola), and the other half of them to an arm that receives a placebo instead of the vaccine (plus the same standard of care).  </span></p> <p style="line-height: 19.0400009155273px;">The main worry with these trials is that it is unethical to give Ebola-sufferers a placebo when an experimental vaccine is available that holds the prospect of benefit. (The prospect of benefit is typically inferred from success in trials with animals; at least one experimental vaccine, ZMapp, has showed <a href="http://www.nature.com/nature/journal/vnfv/ncurrent/abs/nature13777.html">notable efficacy</a> at preventing deadly disease in macaque monkeys inoculated with a virulent strain of Ebola.)  As a prominent group of bioethicists <a href="http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)61734-7/fulltext">recently pointed out</a>, conventional care for Ebola “does not much affect clinical outcomes,” resulting in a mortality rate as high as 70%.  “When conventional care means such a high probability of death,” they continue, “it is problematic to insist on randomizing patients to [a placebo arm] when the intervention arm holds out at least the possibility of benefit.”  Moreover, they insist, “none of us would consent to be randomized in such circumstances.” </p> <p style="line-height: 19.0400009155273px;"><strong style="line-height: 19.0400009155273px; color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px;">The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our <a style="text-decoration: underline; color: #000099;" href="http://www.amc.edu/Academic/bioethics/index.cfm">website</a>.</strong></p>
September 16, 2014

A call for “new rules” for Internet-based research

The John Hopkins Berman Institute of Bioethics put out a press release today, announcing the pre-release of an article in the Proceedings of the National Academy of Science: In Wake of Uproar Over Facebook’s Emotional Manipulation Study, Bioethics Scholars Say New Rules Are a “Moral Imperative” It’s not actually news, many would agree, but good […]
May 13, 2014

Ultrasound before Abortion: Consideration of Recent Research–Closing Comments

In my previous two posts (April 22 and April 29) I discussed an article in the January edition of Obstetrics & Gynecology entitled, “Relationship Between Ultrasound Viewing and Proceeding to Abortion.” The authors found that in Planned Parenthood clinics in LA, the voluntary viewing of ultrasounds by patients seeking abortions appeared to dissuade a very small percentage from continuing on to abortion. From their data... // Read More »
April 29, 2014

Ultrasound before Abortion: Consideration of Recent Research, part 2

Last week I began a discussion about an article in the January edition of Obstetrics & Gynecology entitled, “Relationship Between Ultrasound Viewing and Proceeding to Abortion.” The authors found that in Planned Parenthood clinics in LA, the voluntary viewing of ultrasounds by patients seeking abortions appeared to dissuade a very small percentage from continuing on to abortion. Overall there appeared to be 0.6% absolute risk... // Read More »

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Published Articles (10)

American Journal of Bioethics: Volume 10 Issue 10 - Oct 2010

HIGHEST POLICY IMPACT ARTICLE: An Open Letter to Institutional Review Boards Considering Northfield Laboratories' PolyHeme? Trial

American Journal of Bioethics: Volume 10 Issue 7 - Jul 2010

Review of The Ethics of Consent, eds. Franklin G. Miller and Alan Wertheimer

American Journal of Bioethics: Volume 9 Issue 8 - Aug 2009

Response to Open Peer Commentaries on ?Why Consent May Not Be Needed For Organ Procurement?

American Journal of Bioethics: Volume 9 Issue 8 - Aug 2009

Why Consent May Not Be Needed For Organ Procurement

American Journal of Bioethics: Volume 7 Issue 12 - Dec 2007

Defining the Scope of Implied Consent in the Emergency Department

American Journal of Bioethics: Volume 6 Issue 3 - May 2006

An Open Letter to Institutional Review Boards Considering Northfield Laboratories' PolyHeme Trial

American Journal of Bioethics: Volume 6 Issue 3 - May 2006

Against Bioethics: A Decision Analysis of Consent

American Journal of Bioethics: Volume 5 Issue 5 - Sep 2005

Response to Commentary on ?Adolescent Decisional Autonomy Regarding Participation in an Emergency Department Youth Violence Interview?

American Journal of Bioethics: Volume 5 Issue 5 - Sep 2005

Adolescent Decisional Autonomy Regarding Participation in an Emergency Department Youth Violence Interview

American Journal of Bioethics: Volume 4 Issue 3 - Sep 2004

Revisiting ?Freely Given Informed Consent? in Relation to the Developing World: Role of an Ombudsman

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News (2)

April 27, 2012 9:54 am

California Considers Criminalizing Unauthorized Collection, Use of Genetic Information (GenomeWeb)

California lawmakers are considering a new proposal that would address concerns about keeping genetic information private by making it illegal to analyze, share, or store an individual’s genetic information without that person’s written consent. The Senate Judiciary Committee in the state, which already has adopted enhanced public protections against discrimination based on genetic information, has now passed the California Genetic Information Privacy Act (SB 1267).

April 12, 2012 9:57 pm

iPod video used to encourage organ donation (Reuters)

An organ donation video people can watch on an iPod while they wait at the Department of Motor Vehicles may encourage more to become donors, a new study suggests. Researchers found that for folks getting a driver’s license in their county, the iPod video seemed to sway the decision on becoming an organ donor.