Research Ethics Roundup: African-American Participation in DNA Testing, Difficulties Finding Participants for Alzheimer’s Trials, Eleven Babies Die in Dutch Drug Trial, and the Need for More Investigations into Research Misconduct

This edition of Research Ethics Roundup covers African-American participation in DNA testing, difficulties recruiting participants for Alzheimer’s trials, even when results are promising, the deaths of eleven babies born to mothers in a Dutch drug trial involving generic Viagra, and a call for research misconduct investigations across Britain by the United Kingdom’s House of Commons science and technology committee.

For Some African-Americans, Genetic Testing Reopens Past Wounds
Amy Dockser Marcus, a keynote speaker at PRIM&Rs 2017 Advancing Ethical Research Conference, explores African-American participation in DNA testing, the sensitivities within that conversation, and the future of such research.

“But before they sign up, many African-Americans have to overcome concern about potential misuse of DNA results and mistrust of health research, which has not always benefited them and was sometimes conducted without their consent.”

For Scientists Racing to Cure Alzheimer’s, the Math Is Getting Ugly
As the science grows more robust—and researchers are optimistic that a cure is closer than ever— recruitment for Alzheimer’s trials proves expensive and difficult, putting progress in jeopardy.

“The irony is that the science has never been more promising,” Mr. Dwyer said. “How many promising drugs will be abandoned or their evaluation seriously delayed? Some good science is going to be left on cutting-room floor.”

Eleven babies die after Dutch women given generic Viagra in drug trial
No misconduct is believed to have occurred in a trial in the Netherlands on women whose “placentas had been underperforming.” Eleven babies died as a result of lung issues in the trial of a total of 93 women given the drug.

“Between 10 and 15 women are waiting to find out if their child has been affected by the drug. It is feared that the drug caused high blood pressure in the lungs, leading to the babies receiving too little oxygen. There is nothing to suggest the trial was mishandled.”

We need more investigations into research misconduct
The leader of the United Kingdom’s House of Commons science and technology committee calls for research misconduct investigations across Britain to increase and suggests an independent institution be created to conduct such investigations.

“I’d actually like to see the number of investigations increasing…. We need to take a mature approach to reporting misconduct figures that recognises that no human endeavour is immune to error, questionable practices, and even fraud.”