Abstract: An abyss separates Westerners who consider themselves owners of their genetic characteristics and Melanesians who already have almost no sense of personal property, much less genetic property. Who is ethically positioned correctly? It all depends on the importance given to the collective. The Western posture shows to what extent collectivism has deteriorated in our so-called enlightened democracies. But things get complicated when it is private companies that want to profit from the data.
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The Caledonian drop scrutinized
A large-scale study on gout is underway in New Caledonia. Objective: better understand the genetics of this disease, which is particularly aggressive for the joints and kidneys in our islands. It is not only pejorative, however. Experience shows that New Caledonian gouty people never develop senile dementia such as Alzheimer’s. Excess uric acid apparently protects memory. I have gotten into the habit of telling young people with gout that they will remember all their attacks 😉
With its numerous and caricatured cases, New Caledonia is the ideal place to study gout. An observer quickly guesses that the disease is genetic and not linked to dietary abuse, which only serves as an indicator. Melanesian gouty people are thin and dry, not inclined to excess. However, they frequently end up carrying tophi (tophus in the singular), balls of uratic concretions scattered near the joints, exuding a yellowish chalk when they fistulize outside.
An American startup is interested in local genes
But let’s return to the design of the study, because that is my subject. A french professor visiting the islands discovered Caledonian gout and proposed a study to a Seattle start-up to identify the particular genetics of this population. A young rheumatologist was sent to the islands to recruit nearly 2,000 people and classify them into 3 groups: pure gouty, gouty with renal failure, and controls. Everyone is genetically typed.
Our genes… this is a level of construction that has recently passed into individual property. In the era of data vampirism by multinationals, genetic characteristics have become the subject of specific protection. Impossible to carry out the slightest test without your informed and duly signed consent. Even during a routine diagnosis, for example confirming the probability of inflammatory rheumatism by looking for a frequently associated gene, the doctor must complete cumbersome and daunting paperwork.
Side effects of protectionism
This new wokism has brought out of nothing pretentious and pontificating institutions, entirely dedicated to the protection of personal data, which slow down research and significantly increase their administrative costs. For example, 3 months were necessary for our rheumatology practice, the only one in Caledonia, to be able to participate in the study, after the start-up contacted us due to insufficient recruitment.
So here we are, busy having our Melanesian patients read the consent forms. Faced with the questions asked, their eyes widened: “Do you agree that your sample be transferred to the United States and Canada for analysis? Have I understood correctly that these countries do not have the same level of data protection as the countries of the European Union?…” The incomprehension is total. A little annoying for an “enlightened” signature. They are lost, hesitant, and only finally sign because we are a country where people still trust the healthcare team.
Is the genotype marketable?
In summary it is asked: “Do you agree to graciously share your genotype with the laboratory?” This question presupposes that the individual is the owner of her genotype, which is proven in Europe. But has there been a substantive philosophical debate about this? I can’t find any trace of it. The amalgamation is obvious with the personal data acquired, everything that makes the individual specific due to the choices she has made in her life. But is the genetic heritage, given to one at conception (and not birth), part of individual property or the heritage of humanity as a species?
There are in fact two possible claims about this heritage: that of the individual organized from this set of information, and that of the collective who “makes this set available” from a vast library. Responsibilities are shared. The individual may receive certain poor genes, so the collective must strive to correct the disadvantages directly linked to this poor draw. The collective may want to investigate the effects of attributions, so the individual must participate in this effort beneficial to the species.
Public utility
Individual ownership of genes fades before a public utility inquiry. Ethically it should not be necessary to ask for consent if genetic typing is in the collective interest. If the individualist and collectivist poles (the solitary and the united) were balanced in the contemporary citizen, there would have been no need to create all this formalism. Its administrative weight indicates the extent to which collectivism is at half mast today.
Is it not surprising that it is the social collective which bears the cost of these committees, which go against its interests, and which should come under the associative environment, more adapted to the local defense of individual interests? This would avoid these mind-blowing situations where the concerns of hyperconnected but lonely city dwellers are tattooed on disconnected but communitarian islanders.
What about individual benefits?
In our example of the drop, however, there is a loophole: the collection of data benefits a private company, a foreign one at that. The benefit of the research will not go to the collective but to the startup. Normal, it is the financier, after all. It would seem logical that islanders could later benefit from an innovative gout treatment developed based on this research. Under what conditions? Will having given consent, for example, allow you to benefit from it at cost? The form does not mention this. The economic future of the study is absent.
In the end, who do ethics committees protect?… we are right to ask. Individuals or the pharmaceutical business chain? Consent, which is not informed in any way, simply authorizes the collection of data completely legally, without any impact on individuals or the collective as a whole. The benefit is compartmentalized.
A level of negotiation is clearly missing here, that between the startup and governments. If the study and its financial benefits are not in the public domain, it must be clarified how study participants can benefit from their consent. Genetic heritage claims are as follows: Individuals have justified disease claims arising from this genetic heritage, which constitute rights to their genetic data. And the collective also has rights to these genes to improve collective well-being.
The startup must assert all these rights. However, collective rights are hierarchically superior to individual rights. Reason why the government’s consent to the study carried out by the start-up takes priority over that of individuals. This consent must be accompanied by benefits for individuals, even if only easier access to care. This step, much more essential in terms of ethics than individual forms, is missing.
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Erratum: After further discussion with the young rheumatologist who did most of the recruitment, it appears that there was indeed negotiation between the collective and the startup. In this case the collective is that of Melanesian traditional chiefs and the contract indicates that it will receive a fraction of the possible positive economic benefits of the study. Of which act. It is a shame that this very positive point was not indicated in the consent form, which instead indicated “the absence of direct benefit for the participants”. No doubt a good formulation for a European who wonders if they will be paid, but unsuitable for the Melanesian, who is deeply integrated into the collective and mobilizes without difficulty when it is in the interest of the tribes.
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