Tag Archives: prior notification and consultation

Who Owns your Cells? the case of Henrietta Lacks

In 1951, a young mother of five named Henrietta Lacks visited The Johns Hopkins Hospital complaining of vaginal bleeding….As medical records show, Mrs. Lacks began undergoing radium treatments for her cervical cancer…. A sample of her cancer cells retrieved during a biopsy were sent, without her knowledge or consent, to Dr. George Gey’s nearby tissue lab. For years, Dr. Gey, a prominent cancer and virus researcher, had been collecting cells from all patients who came to The Johns Hopkins Hospital with cervical cancer, but each sample quickly died in Dr. Gey’s lab. What he would soon discover was that Mrs. Lacks’ cells were unlike any of the others he had ever seen: where other cells would die, Mrs. Lacks’ cells doubled every 20 to 24 hours.

Today, these incredible cells— nicknamed “HeLa” cells, from the first two letters of her first and last names — are used to study the effects of toxins, drugs, hormones and viruses on the growth of cancer cells without experimenting on humans. They have been used to test the effects of radiation and poisons, to study the human genome, to learn more about how viruses work, and played a crucial role in the development of the polio vaccine.

In July 2021, the family of Henrietta Lacks has hired a prominent civil rights attorney, who says he plans to seek compensation for them from big pharmaceutical companies across the country that made fortunes off medical research with her famous cancer cells…The legal team is investigating lawsuits against as many as 100 defendants, mostly pharmaceutical companies, but they haven’t ruled out a case against the Johns Hopkins Hospital.’

Excerpts from Family of Henrietta Lacks hires civil rights attorney to seek funds over famous cells, Washington Post, July 31, 2021, and https://www.hopkinsmedicine.org/henriettalacks/

Neither Free, Nor Informed: indigenous peoples in Ecuador

The Constitution of Ecuador adopted in 2008 establishes a broad range of rights for indigenous peoples and nationalities, including the right to prior consultation, which gives them the opportunity to influence decisions that affect their lives. But this right has yet to be fully translated into legislation, as the bill for a Law on Consultation with Indigenous Communities, Peoples and Nationalities is still being studied by the National Assembly.

Article 57, section 7 of the constitution guarantees “free, prior and informed consultation, within a reasonable period of time, on plans and programmes for exploration, exploitation and sale of non-renewable resources located on their lands which could have environmental or cultural impacts on them.” The constitution also stipulates the right of indigenous peoples “to share in the profits earned from these projects and to receive compensation for social, cultural and environmental damages caused to them. The consultation that must be conducted by the competent authorities shall be mandatory and timely.”  “If the consent of the consulted community is not obtained, steps provided for by the Constitution and the law shall be taken,” it adds.  Legal grounds for consultation are also established in Convention 169 of the International Labour Organization (ILO), which Ecuador ratified in 1998, and the United Nations Declaration on the Rights of Indigenous Peoples, adopted in 2007.

Nevertheless, recent mining and oil drilling projects have put the government’s commitment to respecting the right to consultation to the test, and spurred indigenous organisations to take action.  On Nov. 28, 2012, hundreds of indigenous representatives converged in Quito to protest the lack of consultation prior to the 11th oil auction round, in which exploration blocks containing an estimated total of 1.6 billion barrels of crude oil would be put up for bids from private companies. At the time, Domingo Peas, a leader of the Achuar indigenous ethnic group, declared that “the government says it has carried out prior consultation, but this is not true.”  “The consultations carried out among the peoples and nationalities in the areas of influence are invalid, because there was no participation by indigenous peoples and nationalities in determining the way they were conducted, they did not respect their traditional methods of decision-making, and cultural aspects, such as language, were not adequately taken into account,” he stressed.  Overall, said Peas, the consultations “were neither prior, nor free, nor informed, and were conducted in bad faith.”

The president of the influential Confederation of Indigenous Nationalities of Ecuador (CONAIE), Humberto Cholango, believes that the authorities have not done enough. “Prior consultation is still pending, we have still not seen the results we would like to see. We need the law to be approved; that would be a major advance,” he told Tierramérica*.

The draft law, comprising 29 articles, refers to consultation on legislative measures and establishes four stages: preparation; a public call for participation and registration; the actual holding of the consultation; and analysis of the results and conclusion.  In accordance with the law, the government will determine if a proposed bill affects the rights of certain communities, in which case the National Assembly will convene a prior consultation that will be conducted through the National Electoral Council…

One year ago, President Rafael Correa stated in one of his regular Saturday broadcasts that non-governmental organisations “want prior consultations to be popular consultations and to be binding; that means that for every step we want to take, we will need to ask the community for permission.”  “This is extremely serious. This is not what the international agreements say. This would not mean acting in the interests of the majorities, but rather in the interest of unanimity. It would be impossible to govern that way,” he declared.  In response to these statements, indigenous organisations sought reinforcement, calling on agencies such as the Inter-American Commission on Human Rights and the ILO to supervise the implementation of prior consultation.

In fact, indigenous communities in Ecuador have already turned to some of these mechanisms in the past. In 2003, the Quechua community of Sarayaku filed a complaint with the Inter-American Commission on Human Rights against the state for authorising oil exploration in their territory, without prior consultation.  The community, located in the province of Pastaza, in Ecuador’s Amazon rainforest region, denounced damages to their territory, culture and economy. In June 2012, the Inter-American Court of Human Rights ruled in favour of the community and against the state. The government is still studying how to pay the required compensation – a total of 1,398,000 dollars for material and moral damages and legal costs – and how to finish repairing the physical damage caused

By Ángela Meléndez, Ecuador’s Indigenous People Still Waiting to Be Consulted, Inter Press Service, May 2, 2012