The Indian DNA Case
Who owns the DNAIrina Yakutenko, "Snob"
Images from the article "Indian Tribe Wins Fight to Limit Research of Its DNA", The New York Times, April 21, 2010
Judicial incident: the Havasupai Indians sued scientists for 700 thousand dollars for studying their DNA without their consent. Upon closer examination, it becomes clear: the question of what happens to biological samples and who will get access to the information contained in them concerns anyone.
The history of the Indians' struggle for their genetic rights began in the 1990s, when scientists from Arizona State University took blood from members of the tribe in order to find out what is the reason for Havasupai's increased propensity for type 2 diabetes. As it should be, in a country that sacredly protects the personal freedom of citizens, when taking tests, the Indians signed the so–called informed consent - a piece of paper explaining why scientists are conducting this study and what risks it may entail.
In the document signed by the Indians from the Grand Canyon, the goals of the study were formulated very vaguely – "the study of the causes of medical/ behavioral disorders", but in words, the institute staff explained to havasupai that they were interested in diabetes. But after the DNA of the tribe members turned out to be with scientists, they could not restrain themselves and at the same time analyzed with its help the origin of havasupai, as well as their propensity to some other diseases, such as schizophrenia.
Quite by chance, in 2003, the Indians learned about these studies from a professor from the same university – and were outraged. Firstly, schizophrenia is considered a shameful disease among Havasupai, and even the suspicion that one of the members of the tribe may be prone to it is insulting. Secondly, the researchers concluded that the ancestors of the Havasupai came to the Colorado Plateau from Asia (like all other Indian tribes), while Indian myths claim that they originally lived in the Grand Canyon. And, finally, thirdly, scientists simply abused the trust of the tribe members and improperly disposed of their genetic information.
The seven-year lawsuit ended with Havasupai's victory. In addition to 700 thousand dollars – initially the Indians demanded compensation in the amount of 75 million (sic!) – they got the university to help the tribe in search of funds for the construction of a hospital and a school. In addition, members of the tribe were allowed to take blood samples stored at the university and destroy them with all appropriate ceremonies in order for the souls living in the blood to find peace.
Trying to get justice from the scientists, the Havasupai persuaded many surrounding tribes to sign a paper refusing to cooperate with the scientists (after the victory, the plaintiffs persuaded the neighbors to abandon this promise). It is possible that after the not very beautiful story with havasupai, not only Indians will be afraid to give scientists their blood (saliva, skin samples). After all, they all contain very personal – even intimate – information about their "owners", who do not want it to become public domain at all.
These arguments look reasonable, but there are also strengths in the position of scientists who disagree with them. Without a large amount of data on diseases, researchers will not be able to reliably predict and effectively treat many of them, including fatal ones. And in order to assess, for example, how strong the connection of a particular mutation with a specific disease can be, scientists often need to regularly receive data from a specific patient. Take samples on condition of anonymity? But try to find for re-analysis a person who was assigned the number 546YH89 ten years ago. But in addition to medicine, there is also a fundamental science that considers the DNA of people living now in much the same way as fossil skulls or rock carvings, extracting information about ancestors from genes – old and not so old. For such a science, all these "letters" are a kind of universal heritage.
In order to promote genetic research, the most determined scientists in 2006 launched a project called the Personal Genome Project, during which they intend to collect all possible information about 100 thousand volunteers. Project participants should provide scientists not only with DNA samples, but also information about their health status, tomograms of various organs, data on height, weight, and so on. The most important thing is that this information, along with the name of the volunteer and information about all hereditary diseases and features, will be posted on the Internet for general access. People are willing to join the project because it is a chance to get a genome transcript for free; but to participate, they must undergo detailed testing, in which they prove awareness of their choice and unwillingness to sue in the future.
But I think this approach may seem too revolutionary to many. Paradoxically, in parallel with scientists who promote such total openness, there are researchers who profess exactly opposite views. At the very end of March 2010, the court suspended the patent of Myriad Genetics for several genetic mutations associated with breast and ovarian cancer in Ashkenazi Jews (descendants of Jews who lived in European countries in the Middle Ages). That is, until the end of March, these mutations were considered to be the property of the company, and only it could conduct DNA tests for the presence of these mutations (for very considerable money, of course). The court's decision demonstrates that society has ceased to consider these letters as belonging to the technical world and considers them something directly related to people.
To declassify everything and put it online, not to report anything or to report only anonymously, to patent everything that is possible – the simultaneous presence in society of all these points of view indicates that it (society) it has not yet decided on its attitude to genetic information. And what do you think, dear readers? Are you ready to donate your DNA to the needs of science?
Portal "Eternal youth" http://vechnayamolodost.ru05.05.2010