Who does the genetic information of humans belong to? Is it a national, commercial, community or private resource? The lack of clarity in these questions, which are being discussed these days in Israel and the world, may entail dangers
Merit Sloin
Illustration: Efrat Belussky
With the rise of science, other fields such as law and ethics are trying
adapt to the new situations it creates. The rapid progress in mapping
The human genome brought into global debate the unbearable ease of hacking
to the genetic secrets of the individual. Yes, in a small drop of blood I will save all the information
the genetic By testing the DNA extracted from the blood, one can predict his chances
of a person to get certain diseases and make use of information of different kinds.
The millions of blood samples stored in the freezers of the hospitals and institutes
The research can reveal sensitive information about almost every one of us.
To prevent this, Meir Shetrit, being a Knesset member, initiated the Privacy Law
the genetic information. A year ago the law was approved and it is about to enter into force
the month. The law regulates the ways to carry out genetic tests, to deliver them
The information resulting from them and the ways of saving it. The law prohibits the use of information
The genetic law for discrimination by employers or insurance companies and determines penalties
donkeys
What is not discussed in the law is the meaning of the genetic information not only to the individual, but also
to the group to which he belongs. Ran Reznik's article, "Genetic Load in Bevor".
A Handful of Lentils" ("Haaretz", 26.10), dealt with the risks involved in the use
in genetic information of Ashkenazi Jews by a private company that drives it
commercial. Following the publication of the article, last month the science committee of
The Knesset chaired by Anat Maor discussed this sensitive issue. "The legislator did not anticipate the
The possibility that a private party will have de-identified genetic information on a large number
of people," says MK Maor. According to Minister Meir Shtrit, "in discussions
that took place in the Science Committee at the time of the legislation, we chose to focus on protecting the individual from
Discrimination and information leakage. We anticipated that in the future, when more questions like
Protection of broad population groups, we will find a way to give them a response as well
in legislation".
The issue arose following the research conducted by the Israeli company ID Gene
with the aim of locating genes that cause a series of diseases including shortness of breath, diabetes,
Cancer, Alzheimer's and heart disease. Each of these probably involves several
Gardens. In order to locate them, the ID Gene company tests the DNA of a community
The Ashkenazi Jews, due to being a homogeneous community. social scientists
They receive patient blood samples from the hospital doctors, compare the DNA
Theirs with a group of 2,000 healthy Ashkenazim and checking where it is
Inconsistency in the genetic profile. This information allows to characterize
and locate the defective genes associated with the disease. The company can sell the
The knowledge she possesses for drug companies or to try to develop drugs herself
sophisticated for diseases.
Studies in genetic material of an ethnic group raise complicated problems.
"The issue is problematic because of the mixing between the private and the public. In addition to that, there is
Here is the industrialization of research, which is inevitable today because the money is in the market
the private There is no doubt that such studies should be done, but ways must be found
to allow this", says Dr. Boaz Lev, Director General of the Ministry of Health.
All the experts agree on this point, but no guidelines have yet been formulated
How to overcome the landmines on the way. Today, a doctor participating in a study must
With the approval of the Helsinki Committee (a committee that operates in all hospitals and the office
health and its role to approve medical research in humans). the doctor
Fills out a form with the patient's details, embedded in the bar code. ID Gene Company
Accepts the barcode only. Most patients know nothing about essence
The research done with donated blood. The patient signs a consent form for participation
in research and the doctor receives $50 from the company for his blood sample.
One of the problems is how to deal with the proper disclosure to the patient. the mother
Does the patient know that his volunteering for research is for the purpose of generating profits? the mother
The recruiter should be the doctor, the beneficiary of financial compensation from the company? Is on
Will the doctor reveal to the patient that he is being compensated for the experiment? is it possible
affect the relationship between him and the patient? How will this information affect
Descendants of that person who did not give their consent to the experiment? should be shared
The patients participating in the research in the company's profits?
Because the studies are done among a population belonging to an ethnic sector
defined, new problems emerge: what happens to the blood samples after use
And is it possible to prevent further use of them? Can the information be misused?
The genetic in the hands of the company? Can genetic structures be discovered this way?
which expose an entire population to sensitivity to chemical substances and have a consequence
About biological or chemical warfare? Can be created as a result of the research
Phenomena such as stigmatization, deprivation or discrimination of a group of people based on background
genetic? Is the transformation of the Israeli population a target for genetic studies
A matter that deserves promotion? Can the population in Israel be harmed by the establishment of
A privately owned genetic database and the transfer of the genetic information, its export and sale?
Is it appropriate for the state to require the business company to participate in profits and allow it?
To carry out the research on the condition that you invest back in the population being tested or
In the general population? Is the genetic information of the country's citizens a resource
National, community or private? And is it permissible for the government to give it up to the company?
A private company that may sell it to another company?
An intensive discussion has been taking place in the international scientific community for several years
In the ethical and normative aspects of research in the field of genetics of
populations. In the bioethical literature it is now common to refer to the community as
The owner of the interests in the planning of the genetic research carried out in it and its approval, and to take care
For sharing the research and its fruits - the products, benefits or profits that will be derived
from him.
The issue is in its infancy around the world and solutions have been found in several places
which are still far from the desired situation. The British government invested 2.5
Billions of pounds in genetic research. Part of this amount is earmarked
to establish a government genetic database; A private initiative is underway in the United States
business on the subject. Next to the president stands a committee of experts who advise on matters
genetic. It was recently published in the Journal of the American Medical Association
A proposal for a document of informed consent to be signed by the owners of the blood samples to be discussed
public; Iceland, whose homogeneous population is about 300 thousand people,
established a genetic database of all its citizens. The Icelandic government sold the
The genetic pool for a commercial company that uses it for medical developments.
The company recently sold the reservoir to the pharmaceutical company Roche for 200
million dollar; Estonia established a genetic pool similar to Iceland, but is not
sells the ownership of the information but only the right to use it; Sweden
established a company jointly owned by the government and the universities, which does the
The genetic studies. Recently the government started selling its shares to the public
the wide From a legal point of view, the citizens participating in the experiment are the owners of the blood
and the gardens, but the researchers own the copyright in the discoveries.
In the discussion in the Knesset, all the participants agreed that the fruits of the research will bring benefit
for patients and promote science and medicine, but the problems cannot be ignored
Ethics, morality and law. "Although the study does not check the prevalence of
Diseases among Ashkenazi Jews, there is a clear danger to the stigma of the community
Ashkenazi, not from the actual research but from the distortion of the results by means
the media", believes Prof. Ariela Oppenheim from the medical school of
The Hebrew University. For their part, the company's representatives reply that "it is not about
So Ashkenazim have more asthma, and even if it is about that, this figure
It is also known without genetic research and so far the claim of stigmatization has not been raised
Regarding this kind of research and results". According to them, the final result
In such a study, it allows the researcher to identify a gene that may contribute to the development of a disease
In the entire population of the earth and not necessarily in the group of people that was studied.
"The ID Gene company pays 50 dollars for each sample, but when they have them
About 2,000 samples they will have a library whose value will cost hundreds of meters", he says
Prof. Avinoam Rakes from the Hadassah Medical Center. "This is a national resource and there is
to share the profits with the state". The company's answer: "Is the State of Israel or
A government ministry that did not fund research is entitled to take part of its profits only from
carried out among the citizens of the country? Nowhere in the world does this type of procedure exist,
And the countries benefit from the research and development profits through taxes and increased activity
the economic".
Prof. Doron Lantz, head of the Genome Center at the Weizmann Institute, believes that there is nothing
Difference between genetic research and any other research. "In the US there are 280 million
Medical samples from patients derived from various studies, and in Israel in comparison
We can talk about millions of samples containing genetic information in the medical sector,
the military etc. From each sample it is possible to reveal genetic information about its owner."
Last month there were discussions on the matter in the Histadrut's Ethics Bureau
the medical and a specially established committee of experts. The committee members agreed
that the research is unusual and that it cannot be treated like any other research
which is done in patients. "The committees will examine the inappropriate uses of information
that will be gathered and criteria will be formulated for examining the matter. Any company you want to make
This type of research will have to meet these standards," says Dr. Yoram
Belsher, Chairman of the Medical Association.
