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KNBA News - Legislators continue to work on state budget; Forgotten Medical Experiment resurfaces

Apr 19, 2016

KNBA News for April 19, 2016

Legislators continue session to finish work on state budget

By the Associated Press

Alaska lawmakers are going into overtime after they were unable to reach agreement on a state fiscal plan. Sunday marked the scheduled end of the 90-day session. But critical issues, including state spending plans and decisions on how to fund them, remained unsettled as lawmakers look to confront an estimated 4-billion dollar deficit linked to low oil prices. Both houses have proposed budget cuts, 283 million dollars in the House and 345 million in the Senate.

The House Finance Committee unveiled a draft rewrite of a bill allowing for structured, annual draws from Alaska Permanent Fund earnings. It also released a working draft of Gov. Bill Walker's income tax bill with an effective date of Jan. 1, 2019, two years later than Walker had initially proposed.

A stumbling block has been how far to push changes to Alaska's oil and gas tax credit system.

Both the House and Senate held marathon floor sessions that ended early Monday morning. Budget committees for both houses are scheduled to meet today. 

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Researcher finds Alaska Natives gave no consent to 1930s test of TB vaccine

By Johanna Eurich, Independent Producer

An almost forgotten medical experiment conducted on Alaska Natives surfaced last week during the Alaska Natives Studies Conference at the University of Alaska, Anchorage.

Eleanor Hadden from Ketchikan found out about the study when her mother Mary Jones, at a 1992 meeting of the Alaska Native Health Board, saw someone going through medical records.

“No one is supposed to go through your medical records unless they have permission," said Hadden.

Jones met researchers from John Hopkins University, who presented a list of names asking for help and information. Hadden says her mother was shocked to see her own name on the list.

"That's my name. That's my brother,” Hadded quoted her mother. “And that's how she found out she was part of the research done in 35, 37."

In the 30's researchers wanted to mount a blind study of the tuberculosois vaccine Bacille Calmette-Guerin or B-C-G. They wanted to test the vaccine, which was being used elsewhere in the world to prevent TB, to see if it was effective. Researchers targeted Southeast Alaska Natives because they had a high rate of TB. They gave the vaccine to those who tested clean of TB.

“The original researches say they would come in and tell the tribal communities we're going to give them a TB time test to see what is going on, give an X-ray and come back next year and check again,” said Hadden. “But they also gave them a vaccine that they didn't know about. And that's what they came back every year to check for was what was going on with the vaccine."

The only people who tested clean of TB at the time were children from the ages of three to 16.  Many, like Mary Jones, were only 4 or 5 years old at the time.  Standards for informed consent were much weaker than they are now. Natives were also considered wards of the state. 

What bothers Hadden is that researchers in the 90's used the earlier protocol to justify another study... arguing that the participants had already given their consent.

"You've already enrolled in it. You've participated for at least 20 years... that we need to find this information out. But the people didn't know they had been involved or that they had voluntarily participated because they hadn't. They were children,” said Hadden. “And do to do follow up on that and write a journal on that and get published, I think is quite troublesome."

Hadden  says the least researchers could've done is acknowledge that Alaska Natives were used without their consent in the first study and apologized before asking permission to do the follow-up study in the 90's.  

But the story of the BCG vaccine test does not stop there. In the 50's, TB rates were still high, prompting officials to push for a statewide vaccine program.  From 1956 to 1958, every Alaskan child was vaccinated... except for those who participated in the original experiment in the 1930's. That meant that Mary Jones, who was given a placebo instead of the vaccine in the study, was never given a vaccine.

"The public health nurses who in what community had been a part of the study. Yes,” said Hadden. “People themselves did not know they had been part of the study.

While presenting her research at the Alaska Native Studies conference in Anchorage, Hadden learned some people are still worried about research conducted in their communities.  She advised everyone to get educated and contact their community and tribal organizations when they see something that does not feel right.  The best protection, she says, is education.