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Tracy Kidder RIP

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Black and white photo of Tracy Kidder and my dad both as young men talking in front of a room full of people
Tracy Kidder and my dad Tom West speaking to a room of people in 1983

A few people reached out to me after learning that Tracy Kidder died this week. I knew him when I was younger and he was friends with my dad who has been gone since 2011 so this has been an interesting time to be thinking back to the 1970s when everyone was alive and things were happening. This is a combination of a few things I wrote to people who have written to me this week.

Tracy basically lived at our house on weekends while he was writing Soul of a New Machine. Sometimes he and my dad would go sailing, sometimes he’d just hang out at the house or go to work with my dad. He and my dad were pals their whole lives, though as my dad became less and less social (wanting to be a destination friend instead of going out places) they did not see each other as much. Tracy did a eulogy of sorts at my dad’s memorial service saying, among other things “The book was very good for me, but I always wonder if it was good for Tom?” and I really don’t know.

The book created an inflection point in my life. My dad became kind of niche famous (and shortly split up with my mom and moved to Acton) and my Mom became sort of crabby and in a weird place being essentially thrust into single parenthood. The book almost never mentions my dad’s home life and it only mentions me for a sentence and my sister not at all. My mother told the most telling story about when she called him at work once in the 70s, he was not in and the assistant said she’d take a message and my mom said “Tell him his wife called” and the assistant was liker “Tom is married?!”

So, the message of the book was odd, “This guy was A LEGEND at working” but at the same time we could read it and be like “Yeah and he was absent as a dad.” I wound up working it out with my dad just fine later in both our lives, my sister maybe not quite as much. My message to the men who told me how much the book meant to them when they were entering the world of technology (and it was always men even though I’m sure the book was useful for other genders of people in tech as well) was to find a more well-rounded life for themselves, to value being a good partner and parent as much as being good at their job. I work in technology now, but I’ve managed a balance that I’ve had to work for. Tech will take your life if you let it.

I liked Tracy when I’d hang out with him if we saw the Todds or something, but he always felt to me like that sort of “went to the right schools” kind of guy–had a boat, had a summer place–which I felt a bit alienated from. To be fair, I think my parents grew up in worlds like that, but they chose a different path for me and my sister. I’ve read a lot of Tracy’s other books and it’s so clear he had such a talent. I am still in touch with Susan Todd (wife of Dick Todd (RIP), editor of Soul of a New Machine) which is one of the few tangible living-person links I have to my younger years besides my sister. Every time a big thing like this happens, I get into my nostalgia feels for a bit. On the pages of SOANM Tracy brought out parts of my dad, both good and bad, which I never knew at all.

My favorite little bit of content about SOANM, and Tracy, is attached to this 2013 blog post (itself quite good). It’s a 1983 report from The Computer Museum (Inside “The Soul of a New Machine” an interview with Tracy Kidder and Tom West on page five of that PDF) which contains the partial transcript of an event that Tracy and Tom did together, a thing that I don’t think they ever did again. When Tracy was asked what he was up to and if he was sick of computers, he said

“I’m digging out from under. I’m writing some articles about atmospheric research. To be honest, I’m a little tired of my book. I put it on my shelf and won’t read it again for years. I think I know what’s wrong with it. In some sense, writing a book is like building a computer. There are rewards but one of the main ones is that Sisyphean one that if you do one you get to do another. So, I have an opportunity now to write a better one.” And he did, he wrote so many books that were, if not better, at least just as good.

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A Unique Pandemic Control Trial - Absolutely Maybe

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Two people are chatting at a reception. One asks, "Were you in the vax or the control group?" The other answers, "Both." (Cartoon by Hilda Bastian.)

When I was young, while I understood pandemics that kill millions could happen in theory, I really thought they were a thing of the past. But now two of the five biggest in recorded history have emerged in my adulthood (HIV and Covid-19). Since SARS crossed over from animals to humans in 2002, other life-threatening corona- or influenza viruses have spread from animals to us every few years. [*] Scientists predict these outbreaks of novel diseases will be more frequent as climate change pushes previously isolated wildlife into close-enough contact to spread viruses to humans.

That makes knowledge about what definitely works to protect communities in pandemics critical. However it’s extremely difficult to run large-scale research projects quickly in such complicated situations—and fear of leaving people exposed in control groups can prevent research getting off the ground. At the same time, opponents of interventions use that lack of data to whip up fear and opposition to acting. As a result, each time a pandemic hits we’re exposed to both infection, and campaigns against the interventions that could protect us.

So it’s impressive when anyone even tries to get an ambitious trial in the field, let alone when a community pulls it off. We need them for vaccines, too. As amazing as the large Covid vaccine drug approval trials were, they could only provide data about some individual-level effects. That makes it easy for critics to suppress uptake and discourage policies to enable mass vaccination: They can focus on known limitations for individuals while fear-mongering about harms.

A powerful way to get that population-level evidence would be controlled trials of vaccine rollout in a pandemic. In addition, as Hemkens and Goodman (2021) pointed out, that has the potential to improve our knowledge of individual-level effects. The vaccine approval studies weren’t designed to evaluate many outcomes, such as rates of mortality, hospitalization, and uncommon adverse effects. They argued if a few million of people in a state or country were randomized to be vaccinated first in a rollout, pandemic surveillance data would be akin to having a randomized trial with 200,000 participants: Many people have to wait longer than others anyway. Hemkens and Goodman point to examples of places where people on waiting lists are randomized to medical appointments to ensure fair access—and it was done with the Medicaid expansion in Oregon as well.

I only saw two randomized trials of Covid vaccine rollout in communities get as far as being registered in 2021. One of them didn’t get off the ground in the end. It was a trial set up by a team at McMaster University in Canada with a Hutterite community. About 4,000 people would have been randomized to either an experimental group receiving early vaccination with the Moderna vaccine, or to waiting till the national rollout reached them. That community was relatively isolated from other communities, but with a lot of communal interaction within it—a particularly suitable setting to test for community (“herd”) immunity. The trial didn’t happen, though, because the researchers’ plans were overtaken by the speed of Canada’s national vaccine rollout.

The other community did pull their trial off, and it was far bigger. The town was Serrana, near São Paulo in Brazil. The trial was proposed and run by a team from the Butantan Institute, a public research agency in São Paulo. The Institute was manufacturing doses of CoronaVac, the inactivated Covid vaccine developed by Sinovac in China. It was the most widely used Covid vaccine in the world, but as with most very large countries, Brazil was not going to have enough vaccine for its whole population in 2021.

Serrana has a population of about 45,000 people. Many people who live there work in other towns, and Serrana was particularly hard hit by Covid. The mayor told reporters, “Our small health system collapsed. It was like a very dark cloud was above the town.” The community welcomed the chance for priority vaccination that the trial offered.

This unique trial’s results were published a few weeks ago (Carvalho Borges 2026). Researchers had divided the town into 25 subareas, and then grouped them into four clusters which were randomized to a spot in the vaccine queue. Residents in the first cluster could get a vaccine dose in week one. One week later, the next cluster would be eligible for their first dose, and so on, until all the trial participants had a chance at vaccine. At the end of a month, when all clusters had been offered the first dose, people in the first cluster were due for their second vaccine dose, and the process was repeated.

This is called a stepped wedge design, because a table showing the step-by-step progress towards treatment for everybody looks like a set of stairs:

Chart showing how 4 identical consecutive blocks of treatment over time create a set of steps, with the proportion of treated clusters relative to controls accumulating over time.

That shape also highlights one of the weaknesses of stepped-wedge trials: The size of the control group shrinks relative to the treatment/intervention arm as time goes on, and changes over time in the community unrelated to the intervention aren’t controlled for as they are when treatment and control groups happen in parallel (Hemming 2015). In the Serrana trial, there was only a week between each cluster, though.

It was exciting watching reports from Brazil as this trial unfolded and the people of Serrano stepped up. Trial enrolment began soon after the study was announced, and it was organized through schools like a local election. Adults were eligible for the trial (with some exceptions), and 83% of all adults in the town ended up getting at least the first dose: 27,390 participants. That was 62% of the whole population—adults and children—in Serrano. (You can read more about the trial in this media report from June 2021.)

Vaccination started in February 2021, and data was collected for a year. The Gamma variant was dominating the pandemic there at the time, with Delta taking over in late August. By the middle of October, Omicron was prevalent. Boosters (third doses) hadn’t been part of the trial design, and most of the trial participants ended up getting a booster—not necessarily CoronaVac—under the national program from August.

CoronaVac was one of the Covid vaccines with the lowest effectiveness (and very low rate of adverse reactions), and there was less data from vaccine approval studies. A systematic review concluded that the trial evidence only provided low-certainty evidence even for the primary outcome of confirmed symptomatic Covid (Graña 2022). The WHO assessment of the vaccine cited a vaccine efficacy rate of 51% with a large range of uncertainty [CI 36–62%] for symptomatic Covid, with little confidence in the rate of more serious outcomes, for example hospitalization [CI 56–100%]. Those early trials were in relatively lower risk people, and they weren’t designed to provide strong certainty about very uncommon outcomes.

The Serrana trial provides more data on serious outcomes. Before the more severe variants arrived and vaccine efficacy waned, the efficacy rate against hospitalization and death was 89.2% [CI 68.1-96.3] from February to May, and 86.8% [CI 72.2-93.7] from May to August.

For the first seven weeks after vaccination started, the rate of hospitalization and death in Serrana was as high as other cities in the region. Then the rate in Serrana dropped while it stayed high in the other cities.

Based on the city’s surveillance data for Covid, mass vaccination had a major impact on circulation of the disease. Carvalho Borges and colleagues report “When approximately 50% of the adult population was fully vaccinated, a reduction in symptomatic COVID-19 was also observed among participants who were not yet fully vaccinated.”

We need multiple studies to build up this knowledge base, especially given the inevitable messiness of a large community trial like the Serrana trial. Still, this study provides an indication about the impact vaccination can have in a pandemic, even if the vaccine isn’t the most powerful one at an individual level—as long as enough people get vaccinated. Perhaps even more importantly, it shows that ambitious pandemic trials are possible. Here’s hoping the Brazilian precedent helps other researchers and communities to aim higher next time.

You can keep up with my work at my newsletter, Living With Evidence. And I’m active on Mastodon: @hildabast@mastodon.online and less so on BlueSky (hildabast.bsky.social).

~~~~

The cartoon and stepped wedge trial graph are my own (CC BY-NC-ND license)(More cartoons at Statistically Funny.)

Disclosures: My interest in Covid-19 vaccine trials began as a person worried about the virus, as my son was immunocompromised: I have no financial or professional interest in the vaccines. I have worked for an institute of the NIH in the past, but not one working on vaccines. I maintain a list of financial disclosures here.

* List of coronavirus or influenza epidemics caused by zoonoses (diseases crossing over from animals) in the 2000s (via Wikipedia):

2002 SARS (coronavirus)

2003 H5N1 (avian flu)

2009 H1N1 (swine flu) (pandemic)

2012 MERS (coronavirus)

2013 H7N9 (avian flu)

2015 H1N1 (swine flu)

2019 Covid-19 (coronavirus) (pandemic)

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acdha
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The Male Norm in Occupational Health Costs Women Their Wellbeing

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Workplace health and safety policies built around a male default leave millions of women exposed to risks that better regulation could prevent.
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sarcozona
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synapsecracklepop
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FRA again
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False claims in a widely-cited paper. No corrections. No consequences. Welcome to the Business School.

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A couple months ago we had a post, This paper in Management Science has been cited more than 6,000 times. Wall Street executives, top government officials, and even a former U.S. Vice President have all referenced it. It’s fatally flawed, and the scholarly community refuses to do anything about it. which was about, ummm, a fatally flawed but very influential paper in Management Science.

The paper in question claimed to find that “High Sustainability companies significantly outperform their counterparts over the long-term, both in terms of stock market and accounting performance,” and I conjecture that one reason for the paper’s great success was that it was pushing a feel-good message that would be popular all over the political spectrum: for the left, it’s evidence in favor of environmental and social sustainability; for the right, it’s an example of the success of the free market, implying that if you care about sustainability, you can get it without government regulation; and, for the center, it’s a message that the system works. It fits in just fine with the baseline smug business-school ideology that firms do well by doing good.

The above story came from my occasional collaborator Andy King, a business school professor himself but of a more disagreeable variety (just as I’m a disagreeable social scientist).

A couple days ago King sent me a followup email:

I would love to get your thoughts and advice on correcting a misreported study.
The publication in question is Eccles, Ioannou, and Serafeim (2014), “The Impact of Corporate Sustainability on Organizational Processes and Performance,” published in Management Science. It is cited roughly 2,000 times per year and has had considerable influence on investment practice and public policy. It is the most cited publication in MS since 2006.

Unfortunately, the method described in the paper is not the method the authors actually used. The authors finally acknowledged this in September 2025, after two years of pressure. Yet they have refused to submit a corrigendum.

I have been in contact with the journals, Management Science, but their policies allow only authors to request corrections. They did allow me to submit a comment for review, since they judged the authors non-responsive, but it must go through a lengthy review process.
I have also contacted Research Integrity Offices, as I believe this constitutes an ongoing violation: the authors are knowingly refusing to correct an acknowledged misreport in their study.

– London Business School (Ioannou) claims there is no violation because he did not conduct the analysis. (To me this seems irrelevant to the issue of correcting a misreport.)

– Harvard Business School (Serafeim’s employer) has declined to disclose the existence or outcome of any internal review.

– Oxford (where Eccles is currently affiliated) claims Harvard is responsible for Eccles’s actions, since the research occurred when he was at HBS.

– I contacted the UK RIO, but they say they are powerless.

Do you have any ideas about what else I can try?

Also, are things generally this bad, or is it just research from business schools?

My response: Yeah, I’ve pretty much given up on Research Integrity Offices and similar organizations after the two experiences described here (University of California professor does blatant data misrepresentation, no consequences) and here (Cornell professor commits tons of research fraud, eventually he’s forced to leave but it takes a long time, and the university does not respond to outside concerns). Or, closer to home, there’s this story of Columbia University continuing to deny that they misreported their U.S. News data. And the Rutgers political science professor discussed here who got an award from the American Political Science Association for a book with plagiarized material . . . and after the APSA was informed of the plagiarism, they refused to take the award away or even have it shared with the people whose work had been copied.

As I wrote about a couple of these cases:

What’s really bad is when the cheaters do a Lance Armstrong and attack the people who reveal the problem. When engaging in this attack on truth-tellers, the cheaters often play the Javert card, acting as if it’s completely fine to plagiarize, and that their critics are obsessed weirdos. It’s as if all the people that matter are buddies at a country club, and they have to deal with impertinent caddies who call them out on every damn mulligan. They may get even more annoyed at people like us who are members of the club but still side with the caddies.

So, yeah, really disgusting that these guys are still teaching at major business schools.

I think the ultimate solution would be to put all these people into a newly created university, Second Chance U. It could be a pretty amazing place, including all the people mentioned above, along with the mathematician who wrote a chess book that took material for online sources without attribution (not plagiarism, in that plagiarism applies to the wording, not to content, but still way uncool), the disgraced primatologist, the other disgraced primatologist, Dr. Anil Potti, Laurence Tribe, Lawrence Summers, any other Larrys we can dredge up, and various poor unfortunates such as Dan Ariely, who through no fault of his own keeps ending up as a coauthor on papers with fake data. It would be the only university where students are absolutely encouraged to use chatbots to write their term papers!

OK, more seriously, in answer to Andy King’s question: No, I don’t know what to do. I’ll scream about it here, just as I keep screaming about Freakonomics pushing stupid science (see here and here for two of many examples), just as I keep screaming about that stupid physicist and his $100,000 per citation, etc etc etc. It doesn’t seem to be doing much, but that’s all I’ve got.

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Redeeming Genetics

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March 24, 2026

Redeeming Genetics

Víctor B. Penchaszadeh on Science and Justice Fifty Years After Argentina’s Military Coup

By Alejo Stark


Víctor B. Penchaszadeh, Photograph taken by Lina Etchesuri in 2025.

March 24, 2026, marks the fiftieth anniversary of the coup d’état that inaugurated the last—and most brutal—of Argentina’s military dictatorships. Euphemistically named the Process of National Reorganization, the junta claimed it was defending “Western, Christian civilization” from a supposed “subversive virus.” Within the Cold War’s polarized climate, and with the backing of the United States, the junta’s immunological logic cast socialist political organizations, labor unions, human rights advocates, and progressive Christian activists as existential threats to the nation.1 By 1984, human rights groups estimated that close to 30,000 people had systematically “disappeared.” Among them were the children of those labeled “subversives.”

The Abuelas (Grandmothers) of Plaza de Mayo were among the first to organize publicly against the dictatorship. Having lost their own children, they began searching for their grandchildren—many of whom were born in clandestine detention centers before their parents were murdered. The Abuelas turned to science for help.2.

Working with a team of geneticists, they helped develop a statistical tool known as the index of grandparentage. While paternity testing existed at the time, the challenge here was different: how to calculate the likelihood that a child was related to a set of grandparents when the parents were missing. Anticipating contemporary DNA-testing techniques, scientists in the mid‑1980s used immunogenetic blood markers to construct the index.

When democracy was reestablished, and as a result of the Abuelas struggle, the Argentine government created the National Genetic Data Bank (BNDG), which preserves genetic information for current and future generations. The Bank has continued its work alongside the work of the Argentine Forensic Anthropology Team (EAAF). As of this writing, the BNDG has succeeded in restoring the identities of 140 grandchildren.3 Their work not only exposed the dictatorship’s denial of the disappearances but also stands as a landmark example of science mobilized in the service of justice. The Equipo Argentino de Antropología Forense (EAAF) concentrated on identification of corpses and skeletons found in a diversity of settings, having identified hundreds of disappeared persons found in clandestine burials and mass graves and has also since expanded its work to Mexico, Central America, and across the world.4

Today, the Abuelas’ five-decade struggle continues, though its future is increasingly precarious. President Javier Milei’s negationist discourse is accompanied by moves to defund both the National Genetic Data Bank and the human rights institutions that have been essential to ongoing identification efforts—efforts that now involve adults seeking to recover their true identities. The situation is exacerbated by Donald Trump’s backing of Milei—a  $40 billion dollar bailout saved the Argentine president in the midterm elections.5 This bailout should be understood as part of a broader intensification of US imperialism in the region, and the world, through a dual strategy that deploys banks (to help their allies) and boats (to kidnap or eliminate their foes).

In this context, I interviewed Argentine geneticist, bioethicist, and activist Dr. Víctor Penchaszadeh. He was born in Argentina in 1942 to a family of Jewish emigres and played a crucial role in connecting the Abuelas with scientists such as Mary-Claire King to develop the index of grandparentage and forging the international networks that sustained what would become the National Genetic Data Bank, whose archive is now named after him. He has published dozens of articles and book articles on genetics, bioethics, and human rights, most recently in the collection Silent Witness: Forensic DNA Evidence in Criminal Investigations and Humanitarian Disasters  and in the American Journal of Medical Genetics.6 He is currently a Full Professor and Director of the Graduate Program in Genetics, Human Rights and Society, at the Universidad Nacional de Tres de Febrero (UNTREF) in Buenos Aires.


What first drew you to science and, more specifically, to genetics? How did that path lead you to pursue advanced studies at Johns Hopkins University?

I have always been very curious and inquisitive. In my time as a medical student in Argentina, I always asked questions to our teachers and read not only textbooks but also the latest journals that arrived at the School. The scientific aspects of medicine drew my attention, including genetics, which captured my interest because of all the enigmas that had to be solved to understand this novel science in the 1960s. At the same time, however, I was very interested in the social issues surrounding health and disease, that is, the social and political aspects of medicine and how they shape medical practice. Thus, I had a dual interest: the science of genetics and the practice of medicine in very close connection with its social determination. Eventually, at the end of my pediatric residence, I earned a scholarship to pursue a postdoctoral fellowship in medical genetics at Johns Hopkins Medical School.

These were very turbulent times in the United States and in the world. Martin Luther King and Robert Kennedy had recently been killed. The US was involved in a number of events contrary to the respect of human rights: the assassination of Che Guevara in Bolivia, the unprovoked war against Vietnam and later the toppling of democratically elected Chile’s president Salvador Allende. To people like me, who cared about social justice, all these events made my training in medical genetics complicated.

However, I managed to take advantage of the wonderful academic environment at Hopkins, where I took advantage of the support of professor Victor A. McKusick, who offered me to take courses at the School of Hygiene and Public Health across the street from the Medical School, which led, two years later, to a Master’s of Science degree in Public Health, fulfilling my longtime goal of linking genetics and public health.

Your early scientific career unfolded during a period of intense political and intellectual ferment in Argentina and around the world. How did the revolutionary spirit of the 1960s shape your scientific work and worldview?

The revolutionary spirit of the 1960s fertilized my intellect, and made me realize that everything in life is interconnected: the health of the people, the suffering and the economic struggles of the working class, the concentration of power of the medical-industrial-financial complex, the exorbitant prices of medicines, the activism for human rights of socially progressive health professionals, the violations of human rights of participants in clinical trials by big pharma, the growth in the US of a brand of bioethics submissive to the medical-industrial complex and thus unwilling to confront big pharma’s manipulations to keep medical patents valid forever.

Although you were not involved in armed struggle, you became a target of the Argentine Anticommunist Alliance in the early 1970s. Could you tell us what happened and how that experience affected you personally and professionally?

After completing my training in genetics and public health in the US, I returned to Argentina in 1971 and started developing a clinical genetics unit at the Children’s Hospital of Buenos Aires. The country continued to be in the hands of the military, the political repression was very harsh, which was confronted by armed struggle by several guerrilla groups. Political violence increased with the formation of a right-wing paramilitary group, the Argentine Anticommunist Alliance, which had the support of the military and began to commit assassinations in broad daylight of well-known progressives.

In 1973, the military negotiated with political parties, allowing the return of Perón (the leader of the Peronist party who had been in exile for 18 years) to the country. This was a major political turning point: Perón won the general elections and became the president of Argentina. Unfortunately, he gave continued support to the Argentine Anticommunist Alliance, which continued to assassinate progressives openly. At the same time, popular armed organizations continued confronting the military.

Although I was not involved in armed struggle, I was a well-known progressive and union activist at the Children’s Hospital, which made me very visible to the Anticommunist Alliance. On December 19, 1975, I was abducted from my office by four armed thugs in civilian clothing, who beat me and pushed me to the street, attempting to put me by force in their car and threatening to kill me if I resisted. I was lucky that a crowd intervened in my favor, as a result of which I was left fallen on the street while the would-be abductors rushed away. I have no doubt that if the kidnapping would have been successful, they would have killed me. In the circumstances of Argentina at that time, impunity was rampant, so they could try to attempt an abduction again, or directly kill me. This was a clear sign that I had to leave the country immediately, which I did 48 hours later, flying to Caracas, Venezuela, where my brother Pablo, a marine biologist, had found refuge a few months earlier.

Needless to say, the attempted abduction with the most likely objective to kill me, affected me very much, both personally and professionally. When I left Argentina, I left behind my wife and two small children. I had no idea what future awaited. Fortunately, as I said earlier, I had my brother in Caracas. Also, I was friends with a geneticist who had done the same fellowship with me at Hopkins. His name was Sergio Arias, he was the chief of the Laboratory of Genetics at the Venezuelan Institute of Scientific Research (IVIC), he was an excellent person and very solidary. Soon I joined his lab with a position of research scientist.

My wife and children arrived in Caracas one month before the military took full power in Argentina in March 24, 1976, and installed a brutal dictatorship, unleashing terrible repression, not only against armed groups but also against the people in general and society: during the nearly eight years of the dictatorship, 30,000 people were disappeared after having been savagely tortured.

In Caracas we felt very secure. The solidarity and support we received from Venezuelans was tremendous. Slowly we embarked on a new immigration, helped by colleagues and newly made friends. I engaged in solidarity work with a large influx of exiled Argentinians, Uruguayans, and Chileans—all of whom were fugitives of dictatorships in their countries.

How did your years in Venezuela and later in the United States shape your scientific trajectory and political commitments?

I was very active teaching genetics and developing genetics services which were non-existent in Venezuela. In 1978 I earned a travel fellowship to attend the International Congress of Genetics in Moscow, where I met Luis Heredero, the head of the Cuban National Center of Medical Genetics.

We became close friends and he invited me several times to Cuba to teach as well as to collaborate in research. My academic status enabled me to circumvent the US embargo against Cuba because scientists and academics were exempted from the travel ban to the island. And I took full advantage of the possibility to help in the development of medical genetics there, under the direction of Luis Heredero.

On every trip I would bring into the island laboratory supplies and the most recent literature on genetics. For about twenty years I travelled at least once a year and was involved in developing a two-year educational program that would train young physicians in genetics and place them throughout Cuba to conduct genetic tests and counselling.

This program was very successful, and it created the concept of “community genetics,” with dozens of graduates contributing to the development of medical genetics. My work was recognized by the World Health Organization (WHO), which in 1989 created a WHO Collaborative Center in Community Genetics and Education, located in the Division of Medical Genetics of Beth Israel Medical Center in New York City, of which I was appointed as director. This development enabled me to amplify the scope of my educational activity in medical genetics and my expertise in the organization of genetic services in resource-poor countries, particularly in Latin America.

Also during my years in Venezuela and the US, I travelled extensively throughout Latin America and came in contact with the reality of poverty, dictatorships, human rights violations and lacking health services in many countries of the region. My reaction to these realities was to turn myself into a human rights activist, joining several human rights organizations, such as Physicians for Human Rights (PHR) and Human Rights Watch (HRW), to advocate for the right to health.

This was indeed a time of human rights activism, particularly due to the serious violations of the Reagan wars in Central America. As a member of Physicians for Human Rights, I participated in a number of missions defending medical neutrality in El Salvador, Mexico, and Guatemala. In addition, my several trips to Cuba helped shape my conviction that a proactive state is essential to ensure that genetics and the right to health are part and parcel of national health systems.

How did you first encounter the Abuelas de Plaza de Mayo? What do you remember about that initial meeting?

In the US I belonged to an Argentine organization with connections to the growing number of human rights groups that were very active in opposing and condemning the dictatorship and its savage violations of human rights. The Abuelas de Plaza de Mayo was one such group, whose goal was to find the hundreds of babies born in captivity to mothers that were “disappeared” in extermination centers run by the military and killed after delivery. These babies were stolen by the military and raised by individuals linked to the repression, including military officers. I had been in indirect contact with the Abuelas and knew of their struggle.

I met Chicha Mariani and Estela Carlotto, who were the President and Vice-president of Abuelas back then, for the first time when they visited New York in November 1982. We had a very intense conversation about a single topic. They asked me: “would it be possible, after the return to democracy, to identify the stolen children, given that their parents cannot be genetically tested because they have been disappeared? Would it be possible to use their grandparents’ blood to assign the genetic identity of any of the several hundred abducted children who were being raised under a false identity?”

As a geneticist, I had no doubt that, similarly to paternity genetic testing, which was commonly used at the time to prove or disprove paternity in civil cases, it should be possible to use the same technology with existing genetic markers in the blood of a child’s putative grandparents to prove or disprove grandparentage. I recall vividly the challenge that Chicha and Estela threw at me as a “non-negotiable” demand: “Victor, given that you are Argentine, that you are a geneticist, and that you live in the center of the world, is there anything more important for you to do than to find a scientific way to identify our robbed grandchildren?”

I was tremendously impressed by the magnitude of this demand, coming from deep inside their hearts, and very charged with emotion. It took me a couple of seconds to answer: “Rest assured that we will find a way to identify the stolen grandchildren using the abuelas’ blood, and I promise that from now on I will not rest until we find the solution.”

Indeed, I was at a watershed moment in my life, having finally found the mission I had unconsciously been searching for years: to redeem genetics from its somber past of having been utilized for violations of human rights, such as discrimination, racism, eugenics and genocide. In fact, it was the Abuelas—with their strength and vision—that helped redeem genetics by giving it a new mission. That is, that genetics be applied at the service of human rights, in particular the right to identity.

You worked closely with Mary‑Claire King during this period. Given her own history of activism in the Berkeley movements of the 1960s, did you share a sense of science as a form of political engagement?

Absolutely! I met Mary-Claire when we were both young geneticists in the early 1970s who shared a social conscience of our work and were accordingly against genetic reductionism and determinism. She had spent some time teaching in Chile in the 1970s during the presidency of Salvador Allende and had to rush back to the US after the coup organized by the Nixon government and the CIA in 1973 which toppled and killed Allende.

Mary-Claire and I have maintained a strong friendship for many years until this day, and we indeed share a progressive vision of science as a human endeavor that should be very much linked to social and political engagement to ensure that scientific applications should never endanger people and society and always respect human rights and social justice.

Right after my meeting with the Abuelas in New York, I called Mary-Claire and asked her for help to find a way to apply the genetic analysis of grandparents for the identification of the stolen grandchildren whose parents were disappeared.

Indeed, Mary-Claire assembled a dream team of population geneticists and mathematicians that in a few months came up with a solution to the puzzle. Their solution was to apply the laws of genetic probabilities to key DNA products flowing in our circulatory system, such as blood groups and histocompatibility antigens. At the time, DNA could not yet be applied directly for human identification.

The testing essentially looked for matches and differences between the genetic markers of a child with an unknown identity, and those of putative grandparents, and subjected the results to sophisticated statistical and probability calculations, guided by the laws of heredity. The result in each case was a “grandparentage index,” which expressed the probability that a particular child was indeed the grandchild of a particular set of grandparents. In the cases that there were no matching genetic markers between the child and the putative grandparents, the grandparentage index is zero, meaning there is no genetic relationship. Of course, the technological development of the forty years since the creation of the grandparentage index, brought automation, sophisticated and fast human identification through DNA, increased use of DNA databases, and the ability to apply this technology to every type of family relationship (and not only the grandparent-grandchild relationship).

In your collaboration with the Abuelas, you became a scientific advisor to the Argentine state during the early years of democratic transition. What were the main challenges you faced in developing the index of grandparentage and establishing the National Genetic Data Bank? How did the international scientific community respond?

I have already made some reference to the challenges that Mary-Claire King and her team encountered developing the grandparentage index. Let me elaborate. The main challenge at the time was that it was the first time ever in the world that a child would be identified by comparing their genetic markers with those of putative grandparents, given that the parents could not be tested because they were disappeared by the military dictatorship.

The first child ever to be identified by testing was Paula Eva Logares in 1984, after the return of democracy. Mary-Claire King personally went to Buenos Aires and collaborated with Argentine geneticists in her identification, after which many more families who had information on their stolen children went to court, where judges ordered genetic testing with the technology devised by Dr. King.

As the number of judicial claims grew, in 1987 Congress enacted a law creating a National Genetic Data Bank (Banco Nacional de Datos Geneticos or BNDG in Spanish) with the specific and exclusive goal of identifying victims of crimes against humanity,such as disappearances and child abductions that suppressed identity. A genetic database was built with DNA samples donated by 350 people who had knowledge or a strong suspicion that their disappeared pregnant daughters or daughters-in-law had given birth in detention and extermination centers run by the military and that, after delivery, the babies were appropriated by people with links to the military. From then on, all genetic testing performed to solve issues of crimes against humanity have been done at the BNDG with intervention of the judiciary.

Over its 39 years of existence, close to over 20,000 people have been tested and the configuration of their DNA markers compared with those in the database. To this day, 140 individuals have recovered their true genetic identity. This last simple assertion cannot describe the emotions that it has brought for the people involved, for society, and for historical memory. The recovered stolen grandchildren are living witnesses of the past horrors of the dictatorship.

The path of justice and human rights, however, has been full of hurdles and challenges. Firstly, conservative circles were unhappy with the work of the BNDG, because it unveiled the abhorrent violations of human rights that the military had committed. Furthermore, the moral status of the Abuelas and the scientific prestige of the BNDG have been questioned by fallacious theories that children would suffer if the truth was revealed and they discovered that they were being raised by criminals. Fortunately, the majority of Argentine society supported the quest of the Abuelas and applauded every time a robbed child or adult recovered their genetic identity. Along the way, genetics itself as a science has earned prestige for being used to solve human rights violations. The international genetic community has supported both the BNDG and the Abuelas.

You’ve spoken about how the Abuelas helped “redeem” genetics from its eugenic past. How do you understand their role in what I call the “repurposing” of genetics into a tool of critique and justice? 

The struggle of the Abuelas made such an impression on the international genetics community that it led to the birth of a new genetics discipline: forensic genetics, or the science of human genetic identification. Furthermore, genetics should be a science pushing for respect and support  for human rights, particularly the right to genetic identity, the right to health, to education, to equality and to social justice. It is clear that most of the wrongdoings and injustices based on genetics in the past (racism, discrimination, eugenics, and genocide) were due to deformations of genetics brought about by genetic reductionism and genetic determinism.

We owe to the Abuelas and the socially responsible geneticists the posture of espousing justice and human rights and condemning genetic reductions and determinism. This position would require a desacralization of DNA and a recognition that all human traits (including identity) result from a dialectical interaction between the genome and the environment throughout life.

What are the dangers and possibilities posed by genetic science today?

Continuing with my answer to your last question, the main danger for genetics today is that human characteristics are reduced to the effects of genes, neglecting the powerful effects of the environment. The potential benefits of genetics are the application of new genetic technologies to cure genetic diseases, keeping in mind that the applications should be ethical and respect human rights.

Fifty years after the coup, what are the most pressing challenges facing the ongoing work of identity restitution and the institutions that support it?

The most pressing challenge is how to resist the destruction of the scientific institutions by the current Argentinian government. All scientific institutions in the country—including the BNDG—are now under threat of closure by a government who is not interested in science and consistently violates most of the rights that Argentinian social movements have conquered after decades of struggle—including the right to social benefits from science.

​​​​​Alejo Stark is an astrophysicist, philosopher and cultural critic. He is currently based in Salt Lake City where he works as Assistant Professor in the Department of World Languages and Cultures at the University of Utah.

The author would like to thank Camila Valle for her help with the framing and editing of this interview.


Click here to donate and support the ongoing work of the Abuelas de Plaza de Mayo.


Notes

The post Redeeming Genetics appeared first on Science for the People Magazine.

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A long-running experiment in Colorado provides an ‘alarming’ view of how rapidly unchecked global heating could transform fragile ecosystems

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