Tag Archives: Ethics + Law

Anticipating trouble

Science magazine today reports another ego trip.

A U.S. company [454] has begun to trickle out information on a unique DNA study it calls “Project Jim,” a crash effort to sequence the entire genome of a single individual. The results are likely to be made public this summer. Anonymity is out of the question: It has already been announced that the genome belongs to James D. Watson, winner of the Nobel Prize and co-discoverer of DNA’s structure. Watson won’t be alone: Harvard Medical School has approved a plan by computational geneticist George Church to sequence and make public the genomes of well-informed volunteers—including his own. And J. Craig Venter says his nonprofit institute will soon release a complete version of his genome.

My daily newsletter says that Roche is going to acquire 454 for $155M and plans to use the sequencer for IVD applications, I hope they will forget “Project Jim” somewhere on a harddisk.

Gene therapy in jail

sorry, typo. Press telegram reports that the geneticist William French Anderson was sentenced yesterday to 14 years in prison. The reason, however, was not doing premature human experiments but molesting his assistant’s young daughter, yea, yea.

Three things can not hide for long: the moon, the sun and the truth

This is the slogan of Wikileaks a website under construction that

is developing an uncensorable Wikipedia for untraceable mass document leaking and analysis. Our primary interests are oppressive regimes […]. We aim for maximum political impact; this means our interface is identical to Wikipedia and usable by non-technical people.

We also have some experience in science with whistleblowers leading to further investigations. How will this site guarantee the correctness of any information?

I swear by God that I will speak the pure truth

Will you state your full name?
Will you repeat this oath after me?
I swear by God, the Almighty and Omniscient, that I will speak the pure truth, and will withhold and add nothing.
You may sit down.

I have heard this sentence now eight times – on eight new CDs from the Nuremberg trials with original material by the American Record Group 238 “Die NS-Führung im Verhör” documented by Ulrich Lampen with an introduction by Peter Steinbach. The introductory remarks are well balanced, the sound quality excellent, translation and dubbing artists outstanding, but there seems to be no documentation in the CD box in particular for CD 7, the interrogation of Prof. Dr. med. Karl Gebhard.

I am giving therefore some links here – as otherwise you will not really understand what this man did. None of the other interviews recorded such an aggressive, rude and loud tone – a big-headed, omnipotent medical professor that still believes that winning of the war would have enobled his medical research.

www.shoa.de, the largest German portal on the Holocaust has an article about Herta Oberheuser that contains some information about Gebhard; more at German Wikipedia but the most detailed account may be found in Klee, Auschwitz pp 152. Gebhard was one of the few German physicians that were hanged after the war.

Born in 1897, he studied as Mengele here in Munich, habilitated 1935 as a scholar of Sauerbruch and became associate professor in Berlin. As of 1937, he held a chair of orthopedic surgery, became head physician at the sanatorium (Heilanstalt) Hohenlychen and “Oberster Kliniker beim Reichsarzt SS”. Ravensbrück was only a few kilometer from Hohenlychen. Klee has all the terrible details of his medical research: artificial infection with Clostridium, wood and glass implantation into the lower legs, explantation of limbs, trepanation with artifical brain injuries, phosphor burning of the perineum as punishment, consecutive murdering of patients with evipan or by shooting. Gebhard was medical attendant of Heinrich Himmler and president of the German Red Cross (sic!)

Protocols

The protocols are available as microfilms. I am currently checking with the editors if they can be copied to PDF format.

Epidemiology in a fascist system

Götz Aly and Karl Heinz Roth show in their book that the German Nazi system would not have worked without counting people, identification, classification, separation and elimination. It is a detailed historical account on technical details of coding and storing information about the population, the census of 1933 and 1939, the infamy of telling people that their data of Jewish ancestry in a separate questionnaire would be treated anonymously (p 93). The 1939 census required a “supplemental card” in addition to the household card (p 32)

This card developed by security service, police as well as statistical office was used by the authorities to ask for individual descend (“Was one of you grandparent Jew?”) as well as for the education in commission of the military services. The card should be given back in a separate, closed envelope. The envelope – together with the official affirmation – should delude potential victims and let them believe by the fictitious anonymity to make absolutely true information which was indeed facilitated and guaranteed.

The supplemental cards were then used to build the “Reichskartei der Juden und jüdischen Mischlingen” – the basis of the Holocaust. The Holocaust started with a  knitting needle – the tool to lift the punched supplemental cards.

As mentioned earlier, I think there is a particular obligation with population based studies in Germany where it took 40 years to build epidemiology from scratch again. This is a must-read book for every epidemiologist.

A few hours before being executed, Eichmann was asked by Mr. Ofer, the director of the prison (in my translation)

“What should the Jews have done? How could they have resisted according to your opinion? Eichmann: Disappear, disappear. Our most sensitive point, that they would disappear before being registered and concentrated. Our command units were too weak and even when the police of the respective countries supported us with all their strength, [the Jewish] had a at least a chance of 50 : 50. A mass escape would have been a disaster for us.

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Retraction

Working in a field where hundreds of papers are published every year and none is ever retracted, I highly appreciate a letter in Science.

…D1 dopamine receptor (D1R)-stimulated intracellular Ca2+ release was attributed to a direct interaction with calcyon … the ability of calcyon and D1Rs to co-immunoprecipitate when co-expressed in cells as reported presumably stems from the association of both proteins with clathrin-coated vesicles…thus, the isolation of the calcyon clone in a Y2H screen with D1Rs appears to have been adventitious…

In my opinion this comment advance science and give the authors a much higher credibility than any further paper. Yea, yea.

Some privacy…

Every click leaves many traces in the internet. To enjoy at least some privacy, I recommend to install the CookieCuller, that will destroy all cookies (except some protected cokkies) when closing your browser. A slightly higher level of privacy may be obtained by using TORPARK, that is now even available in a standalone USB stick version form www.torrify.com. Even by using TORPARK you are still identified by your network card – SMAC is the ultimate solution, yea, yea.

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Addendum

Science writes:

As you browse the Internet, many Web sites such as Google’s record a string of tex–the cookie–representing the identity of your computer. And when you use Google, its servers keep track not only of what you search for but also where you go next. People add new entries to this record at the rate of 200 million Web searches per day. This electronic record is key to Google’s business model: Most of its $1 billion annual revenue comes from Internet advertising targeted to individuals.

Another tip – disable also Flash super cookies in the online applet.
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Once again genetic testing

I have argued earlier that the free decision of an individual to allow genetic testing, will also reveal data on genetic relatives that have never consented to that procedure.
A new review by Bruce Weir now confirms that “it is reasonably straightforward to find the probability of the genotypes of individuals when their relationship is known…” My current work lets me also assume that with 500,000 SNP data at hand, much individual characteristics of the donor can be reconstructed – there are no anonymous DNAs datasets as some people still believe.
I even fear that genetic testing will increase for example in “homeless” (in vitro fertilized) individuals as these people will want to prevent sibling marriage – see for example the a-China DNA project. Other people may be curious about their genealogy, others about drug side effect prediction, lifestyle, assurance questions…
With every new dataset, available datasets will gradually decrease their anonymity level. I fear that anonymity is not so much a dichotomous property, it is much more a likelihood ratio to stay unknown under the probability to be known. Yea, yea.

Addendum

Time online of Dec 17, 2006 reports that the British police is holding the DNA records of more than 1m innocent people — eight times more than ministers have previously admitted. I wonder if this will affect participation rate of the UK Biobank that targets health of lifestyle, environment and genes in 500,000 people.

Informed consent – what else?

Ian Chalmers pointed me to a paper on “Rethinking research ethics” by Rosamond Rhodes. She basically argues that protection of the vulnerabale (as a major rationale of informed consent) has been leading over the past decades to a “tangled web of research policies that are sometimes at cross-purposes with the goals that they should actually promote” with current research policies “too often limit research … and therefore promote practices that are unethical and unreasonable by being harmful, wasteful or both”. She tries to make this clear with footnote 9 “Parents should certainly protect their children. But, consider the bicycle riding policy that parents would adopt if they took protection to be their primary parental responsibility. Children would not be allowed to ride bicycles because it would subject them to risk of harm” and so on.
While I am always be willing to discuss dogmas, I think that current research policies on informed consent are well developed for many reasons. Voluntary consent in a democratic society is undispensable. Full information is also vital and not only a matter of protecting vulnerables but also of respect of autonomy. Self-determination leaves the proband the choice to participate e.g. sharing the investigators goals or not. Of course we should recognize when “informed consent” is perverted by just filling in another form. With a few exceptions there is no excuse for not having asked for full informed consent.
I am even shivering by her view “if the Nazi doctors’ only ethical failure in their treatment of human subjects involved lack of informed consent, their behaviour would have been no worse than that of their fellow scientists around the world”. Does she really want to affront scientist around the world? Or does she want to downplay the atrocities of the Nazis?
Coming back to her example – has she ever heard about bike helmets? It is my responsibility to minimize harm for the individual, while allowing movement forward. Yea, yea.

Analyzing the log files for this site, I found this page is retrieved frequently every day. Maybe I should expand on this topic?

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Geneticists and NBIA-PKAN

Geneticists continue to publish about “Hallervorden-Spatz” or “former Hallervorden-Spatz” syndrome.

The German NBIA patient group advocates for many years that these names should be abandoned (the American patient group even formally changed its name 2003). NBIA is a rare inherited neurological movement disorder characterized by the progressive degeneration of the nervous system; NBIA means “neurodegeneration with brain iron accumulation”. Another frequently used disease synonym is pantothenate kinase-associated neurodegeneration (PKAN).

The clinical syndrome has been described by the neurologist Julius Hallervorden and the neuropathologist Hugo Spatz. Robert Jay Lifton does not h>ave any material about Hallervorden and Spatz in “The Nazi Doctors: Medical Killing and the Psychology of Genocide but Ernst Klee in “Auschwitz, die NS-Medizin und ihre Opfer” and Benno Müller-Hill in “Murderous science” mentions both. Professor Hugo Spatz (1888-1969) was docent in Munich 1923, director of Kaiser-Wilhelm-Institut Berlin 1937-1945 and director of Max-Planck-Institut für Hirnforschung Gießen 1948-1957. Professor Julius Hallervorden (1882-1965) was department head at Kaiser-Wilhelm-Institut Berlin 1938-1945 and at MPI for Brain Research from 1948 on.

The former director of Max-Planck association Professor Hubertus Markl mentioned their involvement in Nazi euthanasia in his lecture on Oct 14, 2000 at MDC in Berlin-Buch (own translation): “Recent research showed that brains of hundreds of euthasia victims killed between 1939 and 1944 in Brandenburg-Görden, were mis-used for research purposes. In a single case Julius Hallervorden was present in person, while children were killed in Görden and brains consecutively analysed in his laboratory… As a biologist it remains for me to declare that this is an eternal dishonor for German bioscience.”

Pater emon o en tois ouranois – About paternity testing

The Lord’s prayer has been translated into nearly all languages (where 1,377 languages are online). Having a father in heaven is comforting but from a genetic standpoint we don´t take it literally (in contrast to some other family relationships in the Lutheran tradition).

Although pedigrees usually list only father names, the absolute amount of DNA transmitted from father to children is less than for women, who always transmit a long X as well as mitochondrial DNA. When testing for paternity in family studies, my experience is that about 3% of the children do not match with their fathers (while I have never found a mother that did not match). This fact does not seem to be new: Already the Romans knew that “Mater certa, pater semper incertus“.

Is DNA testing for paternity really so important as many commercial websites make you to believe? Genes are part of our existence, environment is another as well as what WE want to achieve in life. Nay, nay, genes are not so important knowing so many wonderful non-genetic fathers.

Nylenna-Simonsen-Chalmers Misconduct Diagram

The Lancet (10 June 2006, p 1882) had one of the best descriptions of scientific misconduct that I have ever seen (yes, I am also admiring Geoffrey Rose). The authors argue that our current view of misconduction is wrong those caught for fraud being a few “bad apples”. Instead we are facing a continuum ranging from honest and inevitable errors to outright fraud. I agree up to here, however, I do not believe so much in a “slippery slope” – in my experience the intentional selection of certain entry and exit levels is more common.

Here is my expansion of the original N-S-C diagram:
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Yea, yea.

Conflicts of interest

Obviously this has been a problem in the past as nearly all journals now require to sign a conflicts of interest form. Of course I always have conflicts of interest and hesitate what should I report in these forms – that I want to get rich? Or that I want to be famous? Having a pathological interest of self-portrayal? At least the good thing of these conflicts of interest statements is that I finally know how much I can ask for when being invited for a lecture ;-) It seems that some people are even eager to disclose their financial involvement (ebay-like).
On the other hand, what worries me more that the conflicts of interest statement are getting routine now and are rather worthless if not done very carefully. For example lets have a look on two recent nature genetics papers: A paper accepted on 6 Jan 2006 on ichthyosis: “The authors declare that they have no competing financial interest”. Same gene, now atopic dermatitis, accepted on 24 Feb 2006 “The authors declare that they have no competing financial interest”. Same gene, again atopic dermatitis, other population, accepted on 11 May 2006: “A. Irvine has patent shares related with the filaggrin gene. The rest of the authors have declared that they have no conflicts of interest”. Again same gene, ichthyosis and atopic dermatitis, accepted on 23 May 2006: “W.H. Irwin McLean and Frances J. D. Smith have filed patents related to genetic testing for filaggrin and therapy systems aimed at this gene.” Alan D. Irvine and W.H. Irwin McLean are listed as authors on all 4 papers. So, ADI and WHIM may have decided to file a patent following their two nature genetics paper (which would not be possible in Germany, but is probably possible in the UK). BUT – why is the declaration of WHIM missing on the 11 May paper? Why is the ADI declaration missing on the 23 May paper?
Conflicts of interests: I have never met these authors before and I have no commercial interest in that topic, yea, yea.

Nightmare

An anonymous reader at slashdot writes that AOL released search logs of 657,427 users “AOL has released very private data about its users without their permission. While the AOL username has been changed to a random ID number, the ability to analyze all searches by a single user will often lead people to easily determine who the user is, and what they are up to. The data includes personal names, addresses, social security numbers and everything else someone might type into a search box.” The German Green Party already filed a legislation proposal that companies and institutions will need to inform their clients about such accidents. This seems to be very important also for genetic data. Yea, yea.

Link farms

There is an upsurge of so-called “impact augmentation papers” – authors review only papers published in their own journal. Imagine your are an editor. You have published last year 100 articles, 50 are not being cited at all, 45 are being cited 3 times, 4 articles are being cited 20 times. Your papers are being cited 215 times, divided by 99, voila your impact is being 2.17, not too bad (although it would be fair to say that you had picked up only 4 nice papers). Lets go – send out an email to a buddy to write an impact augementation paper – “the year in retrospect in our famous journal”. Lets say, this paper now cites all your orphan papers, in total 85 articles. So your overall impact is 215+85 / 99+1 = 3.0. Wow, an increase of nearly one point by just one paper! Did ICI Thomson notice that? Nay, nay.