Hi Anonymous 2==8!
I am glad to hear you are interested in studying human rights!

The answer to what you should study depends in part on how far along you are with your education and to some degree where you are attending. In high school, courses in history, sociology, and courses on international contexts are helpful. As an undergraduate, deepen your understanding of these subjects, and consider adding coursework in anthropology, sociology, political science, and international law if available. If you are interested in human rights issues in a particular country or area, learning the language is an important asset. Ask about courses offered at your particular institution.

At the University of Minnesota there is an interdisciplinary graduate minor in human rights and undergraduate courses in human rights in the context of global studies. It is possible to build an individualized major with a strong human rights focus. Information on both undergraduate and graduate courses are at the Human Rights Program in the Institute for Global Studies (http://hrp.cla.umn.edu/academics.html ).

Additionally, one needn’t wait to take these courses to access excellent resources on human rights and begin learning. There is a collection of important documents and resources in the online Human Rights Library of the University of Minnesota Law School Human Rights Center (http://www1.umn.edu/humanrts). It so happens that this is one of the world’s best online collections. Finally, check out the United Nations human rights resources (http://www.un.org/rights/). These include both primary documents and information on structures of accountability.

There are health and human rights resources at the World Health Organization (http://www.who.int/topics/human_rights/en/). Also the Health Action in Crises link highlights current issues, many of which are related to human rights (http://www.who.int/hac/en/). Other materials are also available on the resources page of the Program in Human Rights and Health (http://www.phrh.umn.edu). There are also Non-governmental agencies (NGOs) such as Human Rights Watch, Amnesty International, and Doctors Without Borders to provide additional materials and news. Always look at a variety of sources, particularly in complex contexts.

Dear Nora and Evan,
Thanks for your question. You must mean Edward Ball’s "The Genetic Strand: Exploring Family History through DNA ." Is it only that scientists are human and do not like admitting they are wrong?

Given the standards of science (testable hypotheses, evidence, going where the evidence leads) scientists should be the most ready of all to admit mistakes - and one should hold scientists to a high standard. This then raises the question: why do scientists often not admit mistakes?

You may know of the book "The Structure of Scientific Revolutions" by Thomas Kuhn (http://www.des.emory.edu/mfp/Kuhn.html). He discusses social dimensions (beyond idealized scientific method) involved in changing or not changing fundamental views when elements do not fit a theory over a long period - the famous paradigm shift. (Kuhn also has his critics!)

In an open scientific question a hypothesis may not be supported by the outcome of an investigation, but that is still a result.

Certainly scientists don’t like being wrong any more than nonscientists. Scientists can also have extra-scientific interests that may cloud their vision (funding or career may ride on a theory that is not faring well – that is hard to accept). A treatment for a major disease may be more lucrative than fixing an environmental risk factor for it. Which will get supported when asking for limited dollars and why?

Hopes and popular claims may outstrip evidence in a new area of research (for example in medical areas). Some researchers may resort to “hype” to gain public support in controversial areas – but others in the same field will be more cautious and circumspect.

Some act as if admitting error (or limits) will undermine confidence in science (or in their area of science). Likely the opposite is true: Greater candor and public accountability could enhance public confidence in its self-correcting potential.

Your second question: Is DNA testing in its infancy? Should one be wary of claims about it?

As a whole it is a new area, although some genetic markers have been identified for decades. Some are very predictive (for example for Huntington’s Chorea), but most are not. Interactions with the environment may greatly influence what manifests. A genetic element may be a factor – more a probability than a fate.

One should be cautious early on in any discipline while ‘the jury is out’ – particularly regarding popular offers marketed on the internet concerning genetics.

Also developing field may impact values. What if tests predict more accurately? Will a person with a particular trait be devalued socially? (The old eugenicists had much of the science wrong. But what if they had the same attitudes, but more accurate science?)

The Deadly Medicine exhibition points out that moral errors may be completely consistent with rigorous scientific research (noted by Hans-Walter Schmuhl in his Science Museum lecture). This kind of error, I think, is very difficult for scientists to admit when in it (or even sometimes to see it).

Grand ideas claiming ‘scientific’ justification to transform society, reshape human nature, etc. necessarily involve more than scientific method and judgment.

That is a good question to which the answer is ”yes”.

In 1907 Francis Galton stated “Eugenics is the study of the agencies under social control that may improve or impair the racial qualities of future generations, whether physically or mentally.”

“Social control” includes state control, but social pressure may serve as well. Are some current or recent social ideas connected with genetics related to social prejudices? Is there a ‘good eugenics’?

Broad US sterilization laws have largely been voted out although the US Supreme Court decision Buck v Bell (1927) affirming their validity was never overturned (http://www.public.asu.edu/~jacquies/Holmes.pdf ).

Sterilizations without consent continued to be reported into the 1970s including against Native Americans http://muse.jhu.edu/demo/american_indian_quarterly/v024/24.3lawrence.htm....

Narrower laws exist with better safeguards in many states, including Minnesota. Minnesota Statutes 145.925 Subd. 8 states parents must be informed of any advice given to a dependent minor about sterilization in the context of family planning grants. Coercion is punishable.

Also statute 524.5-313 states no guardian may give consent to a ward's psychosurgery, electroshock therapy, sterilization or experimental treatment without a court order. Criteria for sterilizing a developmentally disabled person is found in subsection (4)iii-iv. (https://www.revisor.leg.state.mn.us/statutes/?id=524.5-313)

Old-style coercive government sponsored eugenics continues elsewhere.

Chinese law requires mandatory genetic investigation before marriage and contraception or sterilization when serious genetic risk is found. Some commentators liken this to the 1933 German law (http://www.annals.org/cgi/content/full/125/5/425-a) while others applaud Chinese policy (http://www.bmj.com/cgi/content/full/319/7218/1196).

The UNESCO website briefly debates China’s 1995 Maternal and Infant Health Care Law (http://www.unesco.org/courier/1999_09/uk/dossier/txt07.htm).

Forced sterilizations and forced abortions in China have also been reported (http://news.bbc.co.uk/2/hi/asia-pacific/5281440.stm).

Peru forcibly sterilized many poor and indigenous women into the late 1990’s and has issued an official apology.

Cultural influences play a role now: sex-selection abortion (or infanticide) of females has skewed the natural sex ratio in India and China (http://content.nejm.org/cgi/content/full/353/11/1171). In India girls are most missing among the most educated (http://www.csmonitor.com/2006/0113/p01s04-wosc.html).

This reflects prejudice against females, but does it fit Galton’s definition of eugenics?

If a couple has recessive genes for a serious genetic anomaly - for example Tay Sachs - and they choose to avoid pregnancy, is that eugenics? (http://ghr.nlm.nih.gov/condition=taysachsdisease)

Will future eugenics be a kind of personal choice that is not state-coerced - for example, would sex selection count? (http://microsort.net/ )

What of societal or even medical attitudes regarding those with prenatally identifiable or probable anomalies (such as Down Syndrome)? Do comparisons of dollar costs of an impaired child versus a "normal replacement child" edge closer to Galton’s definition? (http://www.ncbi.nlm.nih.gov/pubmed/10766999)

What of enhancing humans through genetic manipulation or other technological means for example as advocated by transhumanism? (www.transhumanism.org)

It would be difficult to find a regime that attempted to co-opt science or claim itself to be scientific today in the way that National Socialism did in styling itself as a bio-political entity, or conversely a regime that certain scientists claimed was as natural an expression of their biological convictions.

(“National Socialism is nothing applied Biology” said Rudolf Hess; botanist Ernst Lehmann’s variation was that it was “politically applied biology.”)

The Soviet Union likewise had a state biology during the period (Lamarckianism under Lysenko, which held that acquired traits became heritable) while “scientific Marxism” also claimed an objectivity it did not have.

Indeed many Soviet Mendelists (who insisted that acquired characteristics were not heritable in succeeding generations) were sent to the Gulag or shot. Stanford’s Hermann Muller, who attempted to convince Stalin of the virtues of Mendelism for Soviet society, barely escaped, but his assistant was executed. (The documentary by Peter Cohen, Homo Sapiens 1900, provides an engaging history of this, www.frif.com/new99/homosapi.html)

As mentioned above, China has a state eugenics policy, but as a political system it is currently much less self-confident about its practical and theoretical stability (evident in the swing toward capitalism and repressions against the Falun Gong meditation movement and others) – notwithstanding the Chinese Communist Party motto, “Seeking Truth From the Facts.”

In the US there are less systematic episodic entanglements between science and politics such as in debates concerning the secondary effects of abortion or evolution vs. young-earth creationism vs. intelligent design regarding school curricula. There is also the divergent defining of terms in the embryonic stem cell debates - including in legislation – for example regarding what counts as cloning as compared to NIH definitions, http://stemcells.nih.gov/info/glossary.asp.

In these areas there are issues of evidence, authority and political appropriation involved in the policy and political debates, but generally without claiming a particular ‘scientific’ understanding as being the justification or essence of the state’s (or a party’s) existence.

Greetings anonymous,

Thanks for your question –on a somewhat different topic, but elements also link up with a question below on data that may be ‘morally tainted’. Of course, science always takes place within societal constraints, but where and why?

By ‘stem cell research is illegal’ I think you mean the restrictions on Federal funding of research using embryonic stem cell lines. Research is not illegal – but subject to restrictions if using Federal funds. (However, attempting to clone human embryos is illegal in a number of states.)

A number of state governments, such as California’s with Proposition 71, have passed measures supporting further funding of embryonic stem cell research . (http://www.cirm.ca.gov/pdf/prop71.pdf)

The now famous decision by President Bush to fund research using some embryonic stem cell lines came on August 9, 2001. The announcement echoed your question in passing “[…] if these are going to be destroyed anyway, why not use them for good purpose.” (http://www.whitehouse.gov/news/releases/2001/08/20010809-2.html)

The August 9 decision authorized research funding of $250M for a limited number of embryonic cell lines - indicating some 60 lines already created using private funding. (This was actually an expansion over the policy of President Clinton.) However Federal funding would not be available for lines derived after that date. (General information at http://stemcells.nih.gov/ )

As it turned out only about a third of the 60 were functional (listed at Stem Cell Registry, http://stemcells.nih.gov/research/registry/defaultpage.asp ).

An argument against using such lines at all would be not to dignify the destruction of human embryos (or create expanded demand, etc.) A limit hinges primarily on the status or worth of an embryo – with a wide range of positions. The decision's intent was fund some research without (directly) inducing the destruction of other embryos (even in ‘excess’) or the creation of embryos only for research.

One critique of the ‘split the difference’ solution from both sides of the debate was that if the lines are considered morally problematic after the date, is there not still a “fenced goods” problem – using something tainted? (Other pragmatic critiques included problematic characteristics of the growth medium– though at that time significantly better alternatives had not yet been developed. )

With the recent discovery of cell reprogramming techniques, a developing possibility is obtaining human cell lines that function like embryonic stem cells (also tissue matching) without using 'extra' or new embryos, or cloning to make a match.

(One developer, Shinya Yamanaka, stated ethical concerns as motivating his work on the project, though he also researched using embryonic stem cells.)

Some developmental biologists argue one would still need to use embryonic stem cells to research the developmental cascade (not doing so may sacrifice some knowledge). A 1999 report under the Clinton Administration argued that sources less ethically or morally controversial than embryos should be used if available (Ethical Issues in Human Stem Cell Research at http://bioethics.georgetown.edu/nbac/pubs.html) - stating one should revisit the issue as techniques developed.

Below are sources pro and con (by Oregon Stem Cell Center director Marcus Grompus in Nature Stem Cell Reports, October 2007, and several scientists in Time in November 2007 - http://www.nature.com/stemcells/2007/0710/071011/full/stemcells.2007.100... http://www.time.com/time/health/article/0,8599,1685965,00.html?cnn=yes.)

As a side note: stem cell science is a branch of regenerative medicine (the latter combines cellular and structural approaches). A recent research breakthrough in this area was at the University of Minnesota. (http://www1.umn.edu/umnnews/Feature_Stories/Researchers_create_a_new_hea...).

Greetings Random Input Monkey:

Frequently the concept of genetic engineering covers two categories - what is called "somatic" engineering, indicating it effects only the nonreproductive cells of the body, the other is called "germ line" engineering meaning that the intervention could be inherited in subsequent generations.

I have some thoughts concerning this, however as I have touched on some elements close to this in other contexts, I thought it might be good to add another voice.

I forwarded your question to Kate Jirik who is a doctoral student in the History of Science and Technology Program at the University of Minnesota. She has been investigating and thinking about eugenics and related issues for a number of years. Here is what Kate had to say:

* * *
A lot has been written on genetic engineering and its relationship to eugenics. People have come down on both sides of the issue of whether or not it is eugenics. The problem of looking at the question that way is that it presupposes that eugenics is a distinct entity with a defined beginning and end, rather than an expression of the idea that we can create “better” human beings.

The idea that we can create “better” human beings has been around since at least the time of Plato. What eugenics did was add the element of biological determinism to this idea. I think genetic engineering is just another iteration of the idea that we can create better human beings. The question that often doesn’t get asked though, is, “How do you define ‘better’?”

Most people tend to define it in a Lake Woebegone fashion; everybody is above average. However, I don’t see many people thinking through what that actually means. It’s not mathematically possible for everybody to be above average. Do we really want everybody to be taller, smarter, better-looking, etc. or do we lose something important when we lose differences among people?

Who pays the price, both literally and figuratively, when we use technology to create “better” people? Six million people in Europe paid with their lives. 60,000 Americans paid by being involuntarily sterilized. This is not to say that genetic engineering is a bad thing. However, too often we do things because we can without thinking about whether we should.

* * *

Thanks for your thoughts, Kate! (And for your question, RIM.)

Hello anonymous,

Survivors of experimentation have come down on both sides of this issue. Some researchers also disagree and the US government has had contradictory policies.

Concerning Nazi experiments, the Nuremberg doctors’ trial brought to justice at least some of the major perpetrators. The rationale given in Telford Taylor’s opening statement was that the crimes were so horrific that a public accounting must follow so that they would never be denied or repeated. (http://www.ess.uwe.ac.uk/documents/dropstat.htm)

One fruit of the trial was the Nuremberg Code which addressed the ethics of research. (http://ohsr.od.nih.gov/guidelines/nuremberg.html)

The issue of whether to use illicit data is not limited to the crimes of Nazi Germany. A second case is data from Japanese experiments by biological research Unit 721 and its predecessors which conducted experiments in Manchuria against the Chinese population and captured foreigners (1932-1945).

These experiments were greater in number than even those of the Nazis and included bacteriological and chemical warfare research. Individual hypothermia experiments killed thousands of research subjects (whom they called ‘logs’). Additionally, biological agents released into the Chinese countryside to test their effects on an open population killed an estimated 250,000 people.

Unit 721 research results, particularly in biological warfare, were considered important by the US in the context of the cold war. Shamefully, the US bartered with the scientists and traded protection from prosecution to obtain the data. This is in contrast to the doctors’ trials at Nuremberg. (http://news.bbc.co.uk/1/hi/programmes/correspondent/1796044.stm; http://news.bbc.co.uk/hi/english/static/audio_video/programmes/correspon...)

As a result the head of the Japanese unit, Dr. Shiro Ishii was never tried. After the war, the doctor responsible for hundreds of hypothermia deaths, Dr. Yoshimera Hisato, became President of the Medical Faculty of the Prefecture of Kyoto and consultant to the Japanese Antarctica expedition. He and other 721 researchers responsible for the deaths of many victims published data into the 1950s including in English.

One question to ask is what response to data use is likely to make future abuses, even on a small scale, less likely?

One suggestion has been that articles relying on such data should be marked as such and new or other use of this data rejected. However, historical investigations not using the data medically are not ethically problematic.

Were one a victim of such experimentation, would future use of data for the welfare of others make it less objectionable (particularly if some of the research was to protect ‘the general population’ say from bacteriological agents)?

On the other hand, would this use not contain a moral contradiction even after victims and perpetrators have all died (implicitly: ‘we deplore the means, but are glad to benefit from the victims’ data’), when not using it may mean a sooner death?

In 1988 the head of the Environmental Protection Agency barred Nazi data on effects of phosgene gas in a draft report following a letter of concern from 22 EPA employees, many of them scientists. http://query.nytimes.com/gst/fullpage.html?res=940DE2DB163CF930A15750C0A...

In 1989 there was also a controversy at the University of Minnesota regarding the question of possibly using Nazi hypothermia data in proposed analysis by a hypothermia researcher ( Robert Pozos). This issue brought together a two-day conference of scientists, historians and victims of research.

You can listen to the sessions via the Center for Holocaust and Genocide Studies website – including Dr. Pozos’ discussion. (This source is available thanks to the late Dr. Stephen Feinstein who brought the Deadly Medicine exhibition to the Twin Cities.) (http://www.chgs.umn.edu/educational/confAudio.html)

Whle some commentators have questioned the technical quality of the German hypothermia experiments, Til Bärnighausen has argued convincingly that the Japanese freezing data is robust (as a function of the greater extent of the atrocities), which – as he points out - makes the ethical issues unavoidable. (http://query.nytimes.com/gst/fullpage.html?res=9C0CE4D7163BF934A25756C0A...)

Finally the issue of ill-gotten data has not been put to rest, as such data continues to be generated in a variety of contexts. Journals currently reject data generated without proper human research subjects protection, despite technical merits.

For example, the journal Liver Transplantation has rejected data derived from organ transplantation in China, given that over 90% of transplant organs derive from executed prisoners (for whom informed consent cannot be meaningfully spoken of). This is despite possible benefits were the data reported. (http://www3.interscience.wiley.com/cgi-bin/fulltext/114098546/PDFSTART)

Hello Anonymous,

That's a good question.

The 1924 Eugenical News listed 15 full members (Argentina, Belgium, Cuba, Czechoslovakia, Denmark, France, Germany, Great Britain, Italy, the Netherlands, Norway, Russia, Sweden and Switzerland). Yet not every one had a sterilization law. (Argentina’s premarital examination law was linked to issues regarding venereal disease as much as eugenics.)

A 1936 Nazi poster in Neues Volk (‘New People’) celebrated the July 1933 'Law for the Prevention of Hereditarily Diseased Offspring’ proclaiming Wir stehen nicht allein! (in English “We don’t stand alone!”) – with flags of sterilization law countries: US, all Scandinavian countries, Japan, Hungary, England, Switzerland, Poland, Latvia and Lithuania. (http://en.citizendium.org/wiki/Image:Wir_stehen_nicht_allein.jpg)

American eugenicist Paul Popenoe wrote that Germany’s law was not a Nazi innovation but was close to the US model law – a point made in the Deadly Medicine exhibition. (http://www.eugenicsarchive.org/html/eugenics/static/images/2308.html)

US eugenic sterilization laws often lasted into the 1970s with decreasing use (Minnesota’s was unchanged from 1925-1975).

Involuntary sterilization after WW II has been more under the banner of ‘population control’ than ‘hereditary quality improvement.’ Peru, Mexico, India and China have had such, often targeting lower-income or indigenous populations (though China’s policy has allowed more births in rural than urban China).

A throwback appears to be North Korea which by credible reports kills disabled infants and imposes forced abortion to ensure racial purity.

A North Korean doctor who defected, Ri Kwang-chol, testified in 2005 that “there are no people with physical defects in North Korea.” In the late 1990s so-called “9-27 camps” segregated older sick and disabled children from the population. A London Times article in 2006 cites mystical notions of racial superiority with near deification of the leader (Kim Jong Il) - closer to a National Socialist pattern. (http://www.timesonline.co.uk/tol/news/world/article600929.ece)

On the other side of population politics, Kindergeld (government subsidies for more children) now focuses more on numbers than ‘quality’ in countries with a birth deficit (generally considered less than 2.1 births per couple but varying regionally) (http://www.springerlink.com/content/v61858k024860879/). Issues of race, culture, immigration, and citizenship are in play in some contexts including in Europe.

When impairments are the focus (including prenatal diagnostics), one can speak of a eugenic dimension also today, however it is much more individualized. Without state coercion cultural influences – including medical culture and that of patients - may explain regional or national differences in birth rates relative to an impairment (such as Down Syndrome).

A title such as Defiant Birth: Women who Resisted Medical Eugenics recounts pressure of expectations in medical and popular culture despite standards of ‘nondirective counseling.’ (http://www.spinifexpress.com.au/book_detail.php?id=55)

Culture may also play an indirect role in the prevalence of a particular condition - which sounds surprising. (http://www.ncbi.nlm.nih.gov/pubmed/14655874) Even different combinations of technologies used to gather information - a genetic test alone or genetic test plus ultrasound imaging – appear to influence patient decisions for the same diagnosis. (http://www.ncbi.nlm.nih.gov/pubmed/17895628)

'Wrongful life’ legal cases argue a child with a condition would be better off not born at all or an anomaly would have been indicated by a test that wasn’t offered. These cases may impact how life with an impairment is viewed in society generally. (http://www.law.harvard.edu/students/orgs/crcl/vol40_1/hensel.php)

Interestingly even in the math of treatment cost-benefit analysis, people without a condition consistently rate (projected) quality of life lower than those who actually have the condition. (A motto in the disability community is “nothing about us without us.” ) (http://mdm.sagepub.com/cgi/content/refs/19/2/141)

The “social model of disability” analyzes disability as a consequence of biological variation and cultural response. A fundamental question is whether those with detectable developmental variations or impairments are welcome in society and whether parents are provided social support.

What may count in the future as an impairment or even 'species typical' is not fixed given emerging possibilities: intervention or enhancement through genetics, nanotechnology, biotechnology, drugs, or synthetic biology. (http://www.innovationwatch.com/choiceisyours/choiceisyours.2006.08.15.ht...)

While examples from North Korea and to a degree China look like old-style eugenics, new variations based on new technologies may emerge.

Hello Eon,

The most interesting thing about this subject I've learned is that there is always something surprising to be discovered.

From a distance I had not known how widespread eugenic support was across many disciplines (from agricultural breeders to anthropologists, physicians, university administrators, to ministers in some cases).

This of course lead to outcomes that are very shocking, but which many justified at the time and even considered progressive.

The long term insight is that we need to have a critical look not only at past practices, but also those today and into the future.