Victor Penchaszadeh - Genetics and human rights
In November of 1982 I met in New York
with Estela Carlotto and Chicha Mariani,
"Abuelas de Plaza de Mayo" (Grandmothers of Plaza de Mayo) that had come to the city
to report before United Nations the crimes against humanity
that Argentina's dictatorship was perpetrating.
Specially the abduction of babies.
And they came to me with a concern,
a concern of how they were going to identify their grandchildren
once democracy returned, and they could start tracking down
the appropriated children.
And they challenged me, a challenge impossible to turn down,
because they said: What could be more important for an argentine geneticist
than finding a way to genetically identify taken grandchildren?
You would wonder what I was doing in New York
at that time. It happens that seven years before,
in December 1975, three months before the military coup,
I was a doctor, specialized in genetics, working in the city
with my family, my children.
A Triple A group tried to get me into a Ford Falcon by force
with a bandage over my eyes, a gag in my mouth and my hands tied backwards.
I escaped from that, in another talk I tell you how,
and went into exile.
First in Caracas, for four or five years,
then New York, where I lived and worked for 25 years
in areas related to my specialty, which is the prevention and treatment of genetic diseases.
Now, for a geneticist like me, with social awareness
and a human rights activist, I felt a little awkward about
the geneticist label because I knew that genetics in the past
had been used to violate human rights.
Since the time humanity was divided into watertight compartments
called races, and besides, hierarchically because the most valuable race
was the white and the least was the black or african,
which in turn allowed and justified according to Christian principles
the slave market.
But then, also through the formulation of a doctrine
called "Eugenics", meaning: well born,
which was pseudo scientific and intended to discriminate
people in terms of who could and couldn't breed,
according to their traits, if they were desired or undesired,
all this outlined, of course, by the power.
Immigration fees, compulsory sterilization.
At the beginning of the 20th century, in the US
and in other countries, dozens of thousand sterilizations
were done to people the system considered not right to breed,
until the holocaust perpetrated by the Nazis,
but justified for them by a pseudo scientific and false
genetic doctrine they called: racial hygiene.
The worst aspect is that said doctrine was supported
by the most distinguished German geneticists of that time.
So, coming back to the challenge proposed by Abuelas in New York
in 1982, I thought it would be an excellent opportunity
for genetics to really be able
to make it work and connect it to the defense of human rights.
When I started to think about the problem,
I believed it wouldn't be very complicated since at that time they were performing
paternity tests.
Some inherited substances were tested,
which were present in blood, and then they established
after comparing those genetic markers
between the child and a possible father, they could establish
the probability that this man were actually the father of the child.
And I say probability because in genetics everything is about probability,
and that paternity probability is what is called Paternity Index.
Obviously then, we had the technology to test inherited substances in blood,
compare them between people, in this case children with unknown identity
and their possible relatives.
The problem is that these abducted children
were taken away from missing parents.
Obviously, the missing parents were not there to be tested,
but we also know that all our genes
are present in our parents, clearly,
but also in our four grandparents.
That is to say we had the methodology
for the laboratory and for the statistical study as well, in order to proceed accordingly.
But, was it like that? How can you go from a paternity test to a grandparentage test?
It's not that simple, because all this mathematical and statistical calculation
of probabilities are less certain
if we skip a generation.
That is why a team work was required,
with geneticists, epidemiologists, statisticians, mathematicians,
to reformulate statistics and probabilities,
taking into account the fact that in order to determine grandparenthood
we were missing out the unknown generation of the parents.
And this was called: grandparentage index.
I insist on the fact that this was real team work, not just one person's.
And I had the good fortune to be part of that team.
This statistical formulation was practically ready
by the return of democracy and indeed
it was the one that was used for the first recovery of identity
of a taken grandchild, Paula Eva Logares, 7 years old at that time.
The Argentine Forensic Anthropology Team is working in a similar way,
as you know, they have a different mission,
which is to identify skeletal remains.
And they started with anthropological techniques.
Both lines of investigation, linked to the validity of human rights,
progressed a lot in the last decades.
Because since then, 1984 until now, it's been practically three decades
with extraordinary advances in the ability to test DNA.
These original tests of the 80s I'm talking about
were not performed with DNA. Nowadays, everybody knows
that DNA is virtually like magic or automatic.
Well, at that moment it wasn't like that, but at the end of the 80s,
beginning of the 90s, it appeared the probability to test DNA directly
and not through products.
Clearly, this allowed a faster,
more certain, more reliable, automated
and much less expensive identification.
Also, there were changes at a social, ethical and political level.
This claim from Abuelas, in the first years of democracy,
finally resulted in a law that created National Genetic Data Bank,
that works at present and allowed
the storage of biological samples of the possible grandparents
in a database where they compare
each child, now young adult, that is tracked down
or that suspects being a child of disappeared parents,
a grandchild of Abuelas.
And that's how during the course of 30 years,
109 grandchildren recovered their identity.
This, of course, in part depended on technology,
on the response of the political society, through laws.
But it wouldn't have been possible without the determination,
dedication, passion, discernment and resilience
of our loved Abuelas.
This is something we have to recognize and that persists until today
and for much longer, we hope so.
But we have to think... that they are recovering identities.
It is virtually a never ending process.
At this moment one could consider
that genetics is all powerful.
We analize DNA and know what it is about.
Well, neither too much nor too little.
We, human beings, are much more than
a pack of 25 thousand genes inherited from our parents.
We, as human beings, are basically social,
where our genome significantly contributes.
Without the genome, we wouldn't be human beings but
all human characteristics ultimately depend on the interaction
of the inherited genome with the social, political,
chemical, biological environment surrounding us since birth
and for all our life.
This interaction betwen genome and environment, I insist,
is what determines all our traits.
And I put it forward specifically talking about identity
because when we talk about identity, in fact,
we shouldn't restrict it to the genetic identity.
Identity is much more than that, and it's the indivisible group
of the interaction among the genome and all these environmental
factors I'm mentioning.
This is also valid for other issues related to
genetics and human rights, because it can't be restricted
and many times one thinks about genetics and human rights:
"Oh, yes, the right to an identity". No. There are many other things.
The right to health is also related to genetics.
The right to health, in order to be effective, not only depends on
or needs public policies on social justice, equity
and health services, but also it needs that genetics
accepts that health differences among populations
depend much more on life and environmental conditions
than the genome we are born with.
In other words, the genome... a genome is only as good as
the environment surrounding it.
This is a lesson that as a geneticist was difficult to learn
but I really learned it with the experience.
Science is neither good nor bad. It all depends on the usage,
who uses it, and as regards genetics,
good and evil are not etched on science itself,
it's not about science. It depends on, as I say, who uses it,
the aim and the social control,
the democratic social control of society.
As a geneticist, I feel extremely happy
for having helped genetics to
find its way and course, connected,
since it couldn't be any other way, to the defense of human rights
and, I hope it never strays away from that path.
Thank you very much!
M.G.: I have a question for you:
The grandparentage index, with all the DNA advances we have today,
is it still equally relevant or with the tests
that can be performed at present is more than enough?
V.P: No, no, no, it is absolutely relevant.
Tests report ... they just analyze genetic markers.
Then you need to compare those genetic markers
in a case problem, or in kids with unknown identities,
or in skeletal remains, and you have to compare,
check against the genetic markers
of the possible relatives, grandparents,
children, parents, whoever.
That requires a mathematical and statistical formulation
to be very accurate because it also depends on the frequency of those genetic markers
in the population, the relationship it has,
the inheritance, and the heredity laws are still the same
since Mendel discovered them 150 years ago,
but it's always a statistical probabilistic formulation.
That's why we talk about probabilities,
99.99%, or whatever.
In the judicial, legal vocabulary, for example,
they don't accept degrees of relationship that have
probabilities lower than 99.9%.
And where does this come from? It comes from the
inclusion, paternity, grandparentage or any kinship indices.
That is, the index enjoys good health
and it will be so for a long time.
Thank you very much!
(Applause)