Tag: informed consent

I smell a rat…

…in the records disposition of this twin study.  Yale pulls this kind of stuff

Neubauer conceived the experiment to compare the development of separated sets of twins and triplets with fellow psychiatrist Viola Bernard, to explore one of psychology’s most pressing questions — that of nature versus nurture, or whether human behavior is more affected by environment or genetics. Researchers did not obtain the consent of participants or their adoptive families. They also failed to inform families that their child had been separated from a twin during the adoption process or in their later observation of the children, according to Sharon Morello, one of the subjects of the study.

Compounds it with obfuscation

Many of Neubauer’s subjects have encountered issues accessing the records now housed at Yale. For instance, in 2011, the Jewish Board denied two separated twins — Howard Burack and Doug Rausch — the request for access to the sealed records in a letter that claimed they were never participants of the study. Ultimately, Shinseki helped them prove their participation.

… redactions to the materials were made to ensure the privacy of other subjects.

Morello received a limited selection of 700 pages about two years ago, but frequent redactions made them nearly undecipherable “black pages of nothing,” she said. She has not received any of the photos or videos researchers recorded — though Yale University Library’s guide to the records lists that the films and tapes are stored in Boxes 50-58 in Yale’s Library Shelving Facility in Hamden, Connecticut. Morello feels strongly that 12 years of research must have yielded more than 700 pages of material.

And then tops it all off with a big frackin’ lie

“I don’t think [the study] would be allowed to go forward under current standards,” Latham told the News last week. “But you have to bear in mind that the study was set up well before any of our current regulations were in place … we didn’t have our rules governing research on human subjects until decades after. We don’t commonly retroactively apply ethical standards.”

So all the fuss about Calhoun College is what?

Advertisements