Grassy Narrows First Nation is demanding the federal government reveal the names of at least 143 of its residents who were identified at birth by federal health officials as being at risk for mercury poisoning.

Health Canada has so far refused, citing privacy concerns surrounding the program that saw the umbilical cord blood of scores of babies tested between 1978 and 1992.

Mercury levels found in these samples were high enough to affect brain development, according to a recent scientific report that also says exposure in the womb can cause co-ordination problems and speech disorders.

The cord blood babies are now adults for whom the test results could provide crucial clues to what has ailed them.

Chrissy Swain was born in 1979 but has no idea if she was one of the 143.

“There’s a lot of people who have had sicknesses in my age group, and there is no diagnosis. (They) stutter or have learning problems, like they never really could learn how to read or write,” said Swain, whose left leg can involuntarily shake. She sometimes feels tongue-tied and mumbles. “Maybe (the results) would help us better understand how to help our people more.”

Advocates for Grassy Narrows have been trying to obtain the original, raw cord blood data and other information collected by Health Canada and the province over more than two decades so that their own experts can analyze it in the light of new scientific research and better understand how mercury has impacted the health of the community.

Levi Kokopenace was born in 1978, the first year of the program, and also does not know if he was one of the test subjects.

“They shouldn’t withhold information,” he said. “The community and the people have a right to know.”

From 1962 to 1970, Dryden Paper Co. dumped 10 tonnes of the potent neurotoxin into the English-Wabigoon River system. The site of the plant, now under different ownership, is about 100 kilometres upstream from Grassy Narrows.

The metal does not break down in the environment and can build up in living things, known as bioaccumulation, “inflicting increasing levels of harm on higher order species,” according to Environment and Climate Change Canada.

Bacteria that thrive in wet, low-oxygen environments, such as lake bottoms, turn mercury into its most toxic form, methylmercury.

Methylmercury migrates up the food chain, to fish and then humans. In a pregnant woman, methylmercury can build in the fetal brain and other tissues.

The recent scientific report that analyzed the cord blood data was written by leading expert Dr. Donna Mergler. She reviewed decades of scientific research on mercury’s effects and highlighted the hidden impact of contamination on a community.

Mergler wrote that what recent science tells us is that mercury poisoning occurs at low levels previously thought harmless. At these low levels, a fetus is vulnerable to cognitive damage even if the child’s mother does not show signs of poisoning.

She reviewed a 1996 Health Canada report containing a graph showing an overview of the cord blood results from Grassy Narrows and a nearby community but that did not include any names.

“At these cord blood concentrations, there is consensus from the scientific literature that there would be effects on children’s neurodevelopment,” the report said.

Grassy Narrows first requested “all data” from the cord blood in January of this year. “This information is critical for allowing the government of Grassy Narrows to protect the safety of their people,” one of the written requests said.

Another letter to the government said that data on mercury in cord blood “will help us to determine what kinds of supports are needed to ensure that our . . . young adults have the best possible chances of success under the circumstances.”

The regulator did not provide it.

In mid-July, one day after the Star sent questions to Health Canada, Grassy Narrows representatives received an email from the regulator saying they could have the cord blood data but with identifying information removed. The regulator said they could also have data from a 1996 follow-up study of the development of the same test subjects. But in this case, too, all identifying information will be withheld.

These data sets (the Star was not able to determine when and how much will be sent) will not allow community leaders to match a concerning test result to its owner.

The regulator offered to provide results to the test subjects if those individuals provide consent.

There is a hitch with this plan.

Community sources say such consent may be difficult if not impossible to obtain as those people may not know, or have even been told, if their cord blood was taken at birth.

Health Canada said in an email last month to a Grassy Narrows representative that it was a “complex situation” that is being discussed with the regulator’s Research Ethics Board in an effort to overcome the privacy issues.

Just before publication, the regulator told the Star that test results were shared with the mothers at the time and advice given when mercury levels were high. Health Canada also said mercury levels in cord blood declined through the study years.

“Does Health Canada own this information of my community?” said Judy Da Silva, a Grassy Narrows resident who advocates for the First Nation’s health. “Or does it belong to the people whose blood was taken and to . . . Grassy Narrows? Does Canada tell us what we can and cannot do with information about our own bodies?”

Saying it is working closely with Grassy Narrows and nearby Wabaseemoong Independent Nations (Whitedog), a Health Canada spokesperson said:

“In order to respect the community, its leadership and its members, it’s important for the department to continue to engage in conversations with the community about their questions, needs and expectations. We have reached out to the community and are in the process of arranging meetings with them.”

A 1996 Health Canada report said a total of 309 cord blood samples were taken from these two communities during the program.

Craig Benjamin, indigenous rights expert for Amnesty International, said Health Canada should move quickly.

“The privacy issues are issues that government acting in good faith could sit down with the people of Grassy Narrows and readily resolve,” he said. “There is a paramount responsibility for the government to do everything in its power to make sure they have the information they need to understand their own health and to get the treatment they need and deserve.”

It is not just cord blood that governments have taken from Grassy Narrows.

• Health Canada tested hair for mercury throughout the 1990s and in 1996 conducted a follow-up neuropsychological and sensory-motor test of those who previously had their cord blood sampled.

• Grassy Narrows leaders also sent a request in March to the provincial Ministry of Health and Long-Term Care, believing it had conducted hair and fingernail tests and in 1974 tested mothers and their newborns at Lake of the Woods Hospital in nearby Kenora, Ont.

The ministry told the Star in mid-August that it is looking to see if it has these data and that it will provide as much information to Grassy Narrows as possible while also ensuring the privacy of community members is respected.

• And beginning in the 1970s the provincial government tested brain and other tissues of at least four dead Grassy Narrows and Whitedog residents. The program began after the death of trapper and tourist guide Thomas Strong.

The coroner’s office provided the Star with the verdict from the 1973 inquest jury that reviewed Strong’s case. The 42-year-old collapsed outside his tent in a campground near the Wabigoon River.

Strong died of acute coronary thrombosis. The jury did not conclude mercury caused Strong’s death — a report in the Star at the time said Strong’s blood sample was possibly contaminated — but evidence it heard caused concern.

“There appears to be potential danger to humans caused by mercury poisoning through the consumption of excessive amounts of fish containing high levels of methylmercury,” the verdict said.

The jury recommended, among other things, that the people of Grassy Narrows and Whitedog be tested annually for mercury levels and that the death of a Grassy or Whitedog resident with “a known high mercury content” be investigated by the coroner.

As for the other coroner cases that involved mercury testing, a spokesperson did not provide the results, saying the Star must submit a request under freedom of information legislation.