Rights activists yesterday accused the National Health Research Institute (NHRI) of taking blood samples from Aboriginal students in Hsinchu County “through deception,” alleging it failed to explain to the students or their parents how the samples would be used.
Recently, the Taiwan Association for Human Rights (TAHR) received a complaint from a junior-high student from Hsinchu County that some researchers had asked the school to seek written consent from parents to take blood samples from their children. However, no indication was given as to what the blood samples would be used for, the group’s secretary-general Tsai Chi-hsun (蔡季勳) said.
Looking into the case further, the association discovered the NHRI was actually working on a project commissioned by the Department of Health (DOH) to survey the health of junior-high school students across the country.
While the objective of the project may be positive, the way in which consent was sought from parents in this instance contravened laws and regulations on taking biological information from humans, and — as the students were mostly Aborigines at a school within an Aboriginal township — in violation of the Aboriginal Basic Act (原住民族基本法), Tsai said.
Tsai declined to reveal the names of the school and the township.
“The students and parents were given an eight-page booklet on the project with a lot of difficult [medical] terms along with a letter of consent,” TAHR executive member Liu Ching-yi (劉靜怡) told a news conference. “Without having the situation properly explained and being briefed on possible risks and benefits arising from the project, any written consent is still invalid even if students’ parents do sign the letter of consent.”
Human Subject Protection Association Taiwan board member Lien Chun (連群) said that when he talked to students from the school, “some told me that when their parents didn’t want to sign the consent, they kept getting phone calls from researchers asking why they didn’t want to take part in the ‘free health exam.’”
Tsai added that several students had told her that they thought the blood samples were for a physical examination or blood donation.
On closer examination, the documents used included a clause indicating that by signing the consent, students and parents not only agreed to allow the NHRI to use the samples for the DOH--commissioned project, but also authorized their use in future research projects.
“This is like asking the students and parents to sign a blank check,” Liu said.
In addition to the ethical issue, Tsai said that, according to the Aboriginal Basic Act, when such a project is to be conducted in Aboriginal domains or on Aboriginal individuals, “the researchers should have obtained collective consent from the related Aboriginal community before getting consent from individuals.”
“The NHRI apparently is in violation of the Aboriginal Basic Act,” she said.
Responding to the criticism, NHRI project head Pan Wen-han (潘文涵), who attended the press conference, though he had not been invited, said that he was unaware of the relevant regulations in the Aboriginal Basic Act, but insisted that his team had done everything legally necessary to obtain the consent of test subjects.
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