The Journal of Law, Medicine and Ethics This is an RSS file. You can use it to subscribe to this data in your favourite RSS reader or to display this data on your own website or blog.

INTRODUCTION: Harmonizing Privacy Laws to Enable International Biobank Research
(Source: The Journal of Law, Medicine and Ethics)
Source: The Journal of Law, Medicine and Ethics - December 1, 2015 Category: Medical Law Authors: Mark A. Rothstein, Bartha Maria Knoppers Tags: Symposium Articles Source Type: research

Calendar of Events
(Source: The Journal of Law, Medicine and Ethics)
Source: The Journal of Law, Medicine and Ethics - October 19, 2015 Category: Medical Law Tags: Calendar of Events Source Type: research

Ethical Integrity in Health Care Organizations: Currents in Contemporary Bioethics
(Source: The Journal of Law, Medicine and Ethics)
Source: The Journal of Law, Medicine and Ethics - October 19, 2015 Category: Medical Law Authors: Jessica Mantel Tags: Columns Source Type: research

Physician Dismissal of Families Who Refuse Vaccination: An Ethical Assessment
Thousands of U.S. parents choose to refuse or delay the administration of selected vaccines to their children each year, and some choose not to vaccinate their children at all. While most physicians continue to provide care to these families over time, using each visit as an opportunity to educate and encourage vaccination, an increasing number of physicians are choosing to dismiss these families from their practice unless they agree to vaccinate their children. This paper will examine this emerging trend along with the reasons given by those who advocate such an approach. I will argue that the strategy of refusing to allo...
Source: The Journal of Law, Medicine and Ethics - October 19, 2015 Category: Medical Law Authors: Douglas S. Diekema Tags: Independent Articles Source Type: research

The Pediatrician's Dilemma: Refusing the Refusers of Infant Vaccines
Dealing with the continuously increasing rates of families wanting to either significantly delay or completely postpone their infant's vaccines has created an alarmingly untenable dilemma for the general pediatricians dealing with these families on a daily basis. Pediatricians must decide whether to continue to provide substandard care by foregoing many or most of the infant's highly recommended protective vaccines, or whether to dismiss from the practice the family who refuses vaccines. Much has been written about why they should retain these families, but this paper will discuss some reasonable rationales as to why nearl...
Source: The Journal of Law, Medicine and Ethics - October 19, 2015 Category: Medical Law Authors: Stan L. Block Tags: Independent Articles Source Type: research

Funding the Costs of Disease Outbreaks Caused by Non‐Vaccination
This article examines the financial costs of non‐vaccination, showing how high they can be and what they include. It makes a case for requiring those who do not vaccinate to cover the costs of outbreak caused by their choice. Such recouping is justified because the choice not to vaccinate can easily be seen as negligent. But even if it is not, that choice involves imposing costs on others, and there are good reasons to require the actors to internalize those costs. The article proposes alternative statutory and regulatory schemes to cover the costs imposed on the public purse, focusing on no‐fault mechanisms. We consid...
Source: The Journal of Law, Medicine and Ethics - October 19, 2015 Category: Medical Law Authors: Charlotte A. Moser, Dorit Reiss, Robert L. Schwartz Tags: Independent Articles Source Type: research

Considering Actionability at the Participant's Research Setting Level for Anticipatable Incidental Findings from Clinical Research
Determining what constitutes an anticipatable incidental finding (IF) from clinical research and defining whether, and when, this IF should be returned to the participant have been topics of discussion in the field of human subject protections for the last 10 years. It has been debated that implementing a comprehensive IF‐approach that addresses both the responsibility of researchers to return IFs and the expectation of participants to receive them can be logistically challenging. IFs have been debated at different levels, such as the ethical reasoning for considering their disclosure or the need for planning for them du...
Source: The Journal of Law, Medicine and Ethics - October 19, 2015 Category: Medical Law Authors: Alberto (Betto) Ortiz‐Osorno, Linda A. Ehler, Judith Brooks Tags: Independent Articles Source Type: research

How Agencies Market Egg Donation on the Internet: A Qualitative Study
We systematically examined the content of the websites of 46 agencies that buy and sell human eggs to understand how they market themselves to both donors and recipients. We found that these websites use marketing techniques that obscure the realities of egg donation, presenting egg donation as a mutually beneficial and fulfilling experience. Sites emphasize egg donors' emotional fulfillment (71.4%) and address recipients' anxieties by stressing the ability to find the perfect “fit” or “match” (56.5%), suiting recipients’“preferences”/“desires” (19.6%), and even designing/customizing a child (15.2%). Agen...
Source: The Journal of Law, Medicine and Ethics - October 19, 2015 Category: Medical Law Authors: Jason Keehn, Eve Howell, Mark V. Sauer, Robert Klitzman Tags: Independent Articles Source Type: research

Certificates of Confidentiality: Protecting Human Subject Research Data in Law and Practice
This article draws on our legal and empirical research on this topic to fill this information gap. It includes a description of the purpose of Certificates, their legislative and regulatory history, and a summary of the few reported and unreported cases that have dealt with Certificates. In addition, we outline other statutory confidentiality protections, compare them to the Certificate's protections, and analyze some of the vulnerabilities of a Certificate's protections. This analysis allows us to make specific recommendations for strengthening the protections afforded to research data. (Source: The Journal of Law, Medicine and Ethics)
Source: The Journal of Law, Medicine and Ethics - October 19, 2015 Category: Medical Law Authors: Leslie E. Wolf, Mayank J. Patel, Brett A. Williams Tarver, Jeffrey L. Austin, Lauren A. Dame, Laura M. Beskow Tags: Independent Articles Source Type: research

International Policies on Sharing Genomic Research Results with Relatives: Approaches to Balancing Privacy with Access
Returning genetic research results to relatives raises complex issues. In order to inform the U.S. debate, this paper analyzes international law and policies governing the sharing of genetic research results with relatives and identifies key themes and lessons. The laws and policies from other countries demonstrate a range of approaches to balancing individual privacy and autonomy with family access for health benefit, offering important lessons for further development of approaches in the United States. (Source: The Journal of Law, Medicine and Ethics)
Source: The Journal of Law, Medicine and Ethics - October 19, 2015 Category: Medical Law Authors: Rebecca Branum, Susan M. Wolf Tags: Symposium Articles Source Type: research

Considerations for Returning Research Results to Culturally Diverse Participants and Families of Decedents
There has been considerable debate on which genomic research results to return to participants and when those results should be returned, but little attention to how those results should be returned, especially to minority and culturally diverse participants. This paper explores the cultural and ethical considerations around returning research results to participants and families of culturally diverse backgrounds, with a special focus on considerations when the research participant is deceased, and raises points for further discussion. (Source: The Journal of Law, Medicine and Ethics)
Source: The Journal of Law, Medicine and Ethics - October 19, 2015 Category: Medical Law Authors: Nanibaa'A. Garrison Tags: Symposium Articles Source Type: research

Return of Results from Research Using Newborn Screening Dried Blood Samples
This article explores the circumstances under which research results might be returned, as well as the mechanisms by which state newborn screening programs might facilitate the return of research results. The scope of any responsibility to return results of research conducted using DBS should be assessed in light of the potential impact on the primary mission of state newborn screening programs. (Source: The Journal of Law, Medicine and Ethics)
Source: The Journal of Law, Medicine and Ethics - October 19, 2015 Category: Medical Law Authors: Michelle Huckaby Lewis, Aaron J. Goldenberg Tags: Symposium Articles Source Type: research

Disclosing Secondary Findings from Pediatric Sequencing to Families: Considering the “Benefit to Families”
Secondary findings for adult‐onset diseases in pediatric clinical sequencing can benefit parents or other family members. In the absence of data showing harm, it is ethically reasonable for parents to request such information, because in other types of medical decision‐making, they are often given discretion unless their decisions clearly harm the child. Some parents might not want this information because it could distract them from focusing on the child's underlying condition that prompted sequencing. Collecting family impact data may improve future policy determinations. (Source: The Journal of Law, Medicine and Ethics)
Source: The Journal of Law, Medicine and Ethics - October 19, 2015 Category: Medical Law Authors: Benjamin S. Wilfond, Conrad V. Fernandez, Robert C. Green Tags: Symposium Articles Source Type: research

A Family‐Centered Model for Sharing Genetic Risk
The successes of the Human Genome Project have ushered in a new era of genomic science. To effectively translate these discoveries, it will be critical to improve the communication of genetic risk within families. This will require a systematic approach that accounts for the nature of family relationships and sociocultural beliefs. This paper proposes the application of the Family Systems Illness Model, used in the setting of cancer care, to the evolving field of genomics. (Source: The Journal of Law, Medicine and Ethics)
Source: The Journal of Law, Medicine and Ethics - October 19, 2015 Category: Medical Law Authors: Mary B. Daly Tags: Symposium Articles Source Type: research

How Much Control Do Children and Adolescents Have over Genomic Testing, Parental Access to Their Results, and Parental Communication of Those Results to Others?
Adolescents may often have opinions about whether they want genetic and genomic testing in both the clinic and research and about who should have access to the results. This legal analysis demonstrates that the law provides very little protection to minors' wishes. (Source: The Journal of Law, Medicine and Ethics)
Source: The Journal of Law, Medicine and Ethics - October 19, 2015 Category: Medical Law Authors: Ellen Wright Clayton Tags: Symposium Articles Source Type: research