Nav: Home

New in Ethics & Human Research, March-April 2019

March 25, 2019

Anticipatory Waivers of Consent for Pediatric Biobanking
Jane A. Hartsock, Peter H. Schwartz, Amy C. Waltz, and Mary A. Ott

Almost half of the approximately 900 biobanks operating in the United States contain biospecimens, like blood or DNA, collected from minors with the permission of their parents or legal guardians. But federal regulations provide insufficient guidance on how researchers can use samples from pediatric donors once they turn 18, and tracking them down to ask for consent can be impracticable, time-consuming, and prohibitively expensive. The authors propose that, for studies that don't involve greater risks than those found in daily life and meet other conditions, researchers could request a waiver that exempts them from having to obtain consent from participants at 18 if several conditions are met, including if those donors were over age 12 when they donated their biospecimen. These anticipatory waivers would be in line with evidence that many adolescents are developmentally capable of providing meaningful consent well before they reach legal adulthood. Hartsock, Schwartz, and Ott are at the Indiana University Center for Bioethics at the Indiana University School of Medicine; Waltz is at the Indiana University Human Subjects Office.

Case Study: U.S. Public Health Service STD Experiments in Guatemala (1946-1948) and Their Aftermath
Katye Spector-Bagdady and Paul A. Lombardo

More than 70 years after U.S. Public Health Service researchers conducted unethical experiments in Guatemala--intentionally exposing thousands of people to sexually transmitted diseases without informed consent and often with active deceit--no reparations have been given to still-living subjects or their relatives. This piece presents a case study of the experiments and the inadequate response to them by the entities that were directly involved. "While major regulatory systems were already in place by the time the experiments became publicly known, this case study demonstrates how far we still have to go to ensure that research subjects are protected through¬out the lifecycle of research and in its aftermath," the authors write. Spector-Bagdady is the chief of the Research Ethics Service in the Center for Bioethics and Social Sciences in Medicine at the University of Michigan Medical School; Lombardo is a Regent's professor and the Bobby Lee Cook professor of law in the Center for Law, Health and Society at Georgia State University College of Law.

Also in this issue:
For more information, contact:

Susan Gilbert
Director of Communications
The Hastings Center
845-424-4040 x 244

The Hastings Center

Related Health Articles:

Health records pin broad set of health risks on genetic premutation
Researchers from the University of Wisconsin-Madison and Marshfield Clinic have found that there may be a much broader health risk to carriers of the FMR1 premutation, with potentially dozens of clinical conditions that can be ascribed directly to carrying it.
Attitudes about health affect how older adults engage with negative health news
To get older adults to pay attention to important health information, preface it with the good news about their health.
Geographic and health system correlates of interprofessional oral health practice
In the current issue of Family Medicine and Community Health (Volume 6, Number 2, 2018, pp.
Bloomberg era's emphasis on 'health in all policies' improved New Yorkers' heart health
From 2002 to 2013, New York City implemented a series of policies prioritizing the public's health in areas beyond traditional healthcare policies and illustrated the potential to reduce cardiovascular disease risk.
Youth consider mobile health units a safe place for sexual health services
Mobile health units bring important medical services to communities across the country.
Toddler formulas and milks -- not recommended by health experts -- mislead with health claims
Misleading labeling on formulas and milks marketed as 'toddler drinks' may confuse parents about their healthfulness or necessity, finds a new study by researchers at the NYU College of Global Public Health and the Rudd Center for Food Policy & Obesity at the University of Connecticut.
Women's health has worsened while men's health has improved, trends since 1990 show
Swedish researchers have studied health trends among women and men aged 25-34 from 1990-2014.
Health insurance changes, access to care by patients' mental health status
A research letter published by JAMA Psychiatry examined access to care before the Patient Protection and Affordable Care Act (ACA) and after the ACA for patients grouped by mental health status using a scale to assess mental illness in epidemiologic studies.
Community health workers lead to better health, lower costs for Medicaid patients
As politicians struggle to solve the nation's healthcare problems, a new study finds a way to improve health and lower costs among Medicaid and uninsured patients.
Public health guidelines aim to lower health risks of cannabis use
Canada's Lower-Risk Cannabis Use Guidelines, released today with the endorsement of key medical and public health organizations, provide 10 science-based recommendations to enable cannabis users to reduce their health risks.
More Health News and Health Current Events

Top Science Podcasts

We have hand picked the top science podcasts of 2019.
Now Playing: TED Radio Hour

Why do we revere risk-takers, even when their actions terrify us? Why are some better at taking risks than others? This hour, TED speakers explore the alluring, dangerous, and calculated sides of risk. Guests include professional rock climber Alex Honnold, economist Mariana Mazzucato, psychology researcher Kashfia Rahman, structural engineer and bridge designer Ian Firth, and risk intelligence expert Dylan Evans.
Now Playing: Science for the People

#541 Wayfinding
These days when we want to know where we are or how to get where we want to go, most of us will pull out a smart phone with a built-in GPS and map app. Some of us old timers might still use an old school paper map from time to time. But we didn't always used to lean so heavily on maps and technology, and in some remote places of the world some people still navigate and wayfind their way without the aid of these tools... and in some cases do better without them. This week, host Rachelle Saunders...
Now Playing: Radiolab

Dolly Parton's America: Neon Moss
Today on Radiolab, we're bringing you the fourth episode of Jad's special series, Dolly Parton's America. In this episode, Jad goes back up the mountain to visit Dolly's actual Tennessee mountain home, where she tells stories about her first trips out of the holler. Back on the mountaintop, standing under the rain by the Little Pigeon River, the trip triggers memories of Jad's first visit to his father's childhood home, and opens the gateway to dizzying stories of music and migration. Support Radiolab today at