On BioScience and Life and Such

Archive for April, 2008|Monthly archive page

Epiphany: Transhumanism, – not ?

In Transhumanism on April 30, 2008 at 3:19 pm

While this may be old news for some, it’s a revelation to me. I just discovered another -ism, “Transhumanism”:

……………..radical extension of human health-span, eradication of disease, elimination of unnecessary suffering, and augmentation of human intellectual, physical, and emotional capacities…….

…………This affirmation of human potential is offered as an alternative to customary injunctions against playing God, messing with nature, tampering with our human essence, or displaying punishable hubris…….

Transhumanism” apparently began in 1998 (founded by two philosophers) and it is all about how we relate to (the promise of) technology. It is especially relevant to our perception of modern biology and biomedicine.

The concept is extremely intriguing: – why not use technology to transcend biology and all become super-human.

…..OK…..

But then again, …Super human ? all of us ???

Surely, some must loose out and surely, technology must have limitations we cannot overcome.

Well, I am going to turn a blind eye on these objections and dive into Transhumanism ideology with a skeptic, but open mind.

I will start out by exploring the World Transhumanist Association website. Then I will move on to a book published in 2005 by Raymond Kurzweil where apparently, much of the ideological inspiration behind Transhumanism can be found.

Many other books have been published on the subject and in the periphery of this ideology one can find writings by Einstein, George Bernard Shaw, Marie Curie and Stephen Hawking. Thus, there should be plenty to pick from and a lot to cover.

While I am on this personal mind-trip, I am going to write (several) blog posts documenting my thoughts. Since the possible consequences of all of us becoming super-beings are scary and at the same time wonderful, I believe this is going to be a (bumpy) ride. I would appreciate greatly if you want to follow me into this (mine)field of near sci-fi ideology and comment on my findings.

Let’s start with some quotes, all from The World Transhumanist Association web site:

“Transhumanism is more than just an abstract belief that we are about to transcend our biological limitations by means of technology; it is also an attempt to re-evaluate the entire human predicament as traditionally conceived.”
Nick Bostrom, “What is Transhumanism” (1998).

…..and…..

“‘I believe in transhumanism’: once there are enough people who can truly say that, the human species will be on the threshold of a new kind of existence, as different from ours as ours is from that of Peking man. It will at last be consciously fulfilling its real destiny.”
Julian Huxley “Transhumanism,” in New Bottles for New Wine 1957

….and…..

“The Singularity [human-surpassing machine intelligence] is a frightening prospect for humanity. I assume that we will somehow dodge it or finesse it in reality. One way to do that is to warn about it early and begin to build in correctives.”
Stewart Brand

More to follow……….

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Now this is why we need genetic counselors

In Uncategorized on April 25, 2008 at 12:00 pm

After reading “Living at risk: Concealing risk and Preserving Hope“, which was an eye-opening experience, I am ready to argue against myself and the arguments in my previous post “Now why do we need genetic counselors ?”.

In this post I predicted that genetic counselors may soon be obsolete because nobody cares about low-risk alleles. In addition I argued that information on high-risk alleles is better managed by physicians.

The not caring bit is still true (unfortunately) as far as I know, but after reading the above mentioned paper, I need to modify my opinion on high risk tests. High risk tests in this context, are tests that if positive, means developing disease in the near future. Testing for Huntington disease is a model example of such tests since:

“Penetrance, the likelihood of showing symptoms of the disease if the associated genetic mutation is present, is virtually 100%.”

Thus, this is a clear medical case and a physician should be able to give adequate counsel to the patient. But, the issues a practitioner would face are so much more than medicine alone and recommendations for counseling goes wider than what is expected of a primary care physician:

Nearly every participant with children experienced terrible difficulty in talking to their children about their risk, even when the children were grown. We infer from this difficulty that practitioners could, and should, find ways to help people at risk develop plans for educating their children at an appropriate age. We envision such plans to be developmentally based, geared to answering questions at the child’s level, as well as being persistent and gradual in the presentation of the issues of importance.

This to me, sounds like genetic counseling. Further arguments for genetic counseling comes from the recommendations to the clinicians:

Clinicians also need to reflect on their own beliefs and biases about genetic testing, and to examine the extent to which those beliefs and biases present themselves in their care for people at risk for HD. Primary care health professionals need to be cognizant of the fact that just because a test can be done does not mean that it should be done. What these men and women are telling us is that it is not safe to assume that genetic testing for incurable diseases will necessarily provide information that is wanted, or needed, by those at risk and that testing may have a significant negative impact on the lives of their patients.

Objectively reflecting on genetic testing as well as telling the patient that it may actually be wise not to get tested, are probably things a genetic counselor would do better than the primary care physician.

So, the conclusion must be: I was wrong, we need genetic counselors. Reading “Living at risk: Concealing risk and Preserving Hope” will tell you this. In adition it will teach you that 80-85 % of at risk individuals elects not to undertake predictive genetic testing. They do so to survive since a lack of hope can be devastating:

Something that my uncle said, that I think really stuck with me, is he wrote a suicide note. He said that there’s such a big difference between living with hope and living with knowledge. And that he would take the living with hope any day. And so he really did not think we needed to know, one way or another.

…………and, proper counseling (not only genetic) may be a help for people in handling their life at risk since:

It is noteworthy that several participants said the interview for this study was their first opportunity to talk about the emotional side of HD, despite their years of experience with neurological, cognitive, and psychomotor testing …………… We think that unstructured interviews might actually change the views and actions of the participants with respect to their careful concealment of risk and their preservation of hope.

This is probably true. Regardless of the extent of counseling, it seems to me that genetic counseling for these patients and their family members is a good starting point.

The final take home message must be that not testing for a condition has significant value, especially when treatment options are scarce or non-existent.

Hope is sometimes a life saver. Knowledge on the other hand, can put peoples lives in ruins. Use this as a guiding light if you will, – I know I am going to.

Quote of the month

In Uncategorized on April 24, 2008 at 11:51 am

Key features of the “Open Consent” policy from the Personal Genome Project (Nat Rev Genet. 2008 May;9(5):406-11)

“Open consent as part of the Personal Genome Project implies that research participants
accept that:
• Their data could be included in an open-access public database.
• No guarantees are given regarding anonymity, privacy and confidentiality.
• Participation involves a certain risk of harm to themselves and their relatives.
• Participation does not benefit the participants in any tangible way.
• Compliance with monitoring of their well-being through quarterly questionnaires is required.
• Withdrawal from the study is possible at any time.
• Complete removal of data that have been available in the public domain may not be possible.
The moral goal of open consent is to obtain valid consent by effectuating veracity as a
precondition for valid consent and effectuating voluntariness through strict eligibility criteria,
as a precondition for substantial informed consent.”

While it is commendable to be this honest, one must wonder what it will do to participation recruitment. I have knowledge in the field and I have a fundamentally positive attitude towards these research projects, but even I would think twice before accepting this, what then will the layman do ?

I cannot help but wishing strongly for this approach to work though. If this is the consent for the future then the world is better off than I thought, – and that is most definitely a good thing.

Now why do we need genetic counselors ?

In Uncategorized on April 17, 2008 at 11:49 am

According to the National Society of Genetic Counselors, genetic counseling is:

“the process of helping people understand and adapt to the medical, psychological and familial implications of genetic contributions to disease.”

But a commentary in Science Magazine indicates that these admirable goals are unachievable. It turns out that patients given genetic information on predisposition to disease don’t really care. Consequently, they are unlikely to do any changes to their lifestyle based on the test-results. Behavioral epidemiologist Colleen McBride and human geneticist Lawrence Brody are quoted saying:

“They’re not having big emotional
responses”

And subsequently the author concludes that:

“Behavioral specialists have shifted from
worrying about the devastating effects of
learning about these new genetic risks to
wondering whether the information will
make any impression at all.”

The REVEAL study (by way of Genomeboy) modifies the picture slightly on the willingness to change lifestyle based on test results from APOE, but confirms the lack of distress or anxiety resulting from test results. The REVEAL study was designed to measure:

  • Who seeks genetic counseling and why
  • How APOE disclosure affects risk perceptions
  • The psychological impact of genetic risk assessment
  • How risk information affects participants’ subsequent health and insurance behaviors.

Where the findings included:

  • Disclosing APOE status and its association with Alzheimer’s risk to participants did not result in a significant increase in distress or depression.
  • Participants who discovered they had the high risk APOE e4 allele proved more likely to be proactive in changing their lifestyles and planning for long term care.
  • A majority of participants reported that REVEAL had made a positive impact on their lives (67% positive vs. 17% negative).
  • Participants were more likely to report lower, rather than higher, anxiety about Alzheimer’s disease as a result of being tested (43% lower vs. 11% higher)

Thus, it seems the fear of damage caused by genetic test results is unwarranted or at least highly exaggerated. So, the question is: is there still a need for genetic counselors to ease distress ?

Yes one might answer, since genetic counseling is still needed to interpret the result. … – But,

In addition to the well known test for BRCA1, genetic tests are increasingly emerging that will give clear cut answers. Additional examples are colon cancer and lung cancer if you are a smoker. Understanding the technology behind the test becomes less important when test-results leads to unambiguous recommendations. No need to know what a SNP is if having it gives you a disease risk of 80-90 %. Thus, counseling to explain the problem of uncertain statistical probabilities may soon be obsolete.

If the risk turns out to be less than 80-90 % (and consequently less reliable for a physician as a proper pre-diagnostic test), according to the piece from Science magazine: it looks like nobody will care. If this is the case, genetic counseling for tests associated with medium to low risk becomes superfluous.

As an alternative then, I would suggest that genetic counselors turn their focus towards relieving group damages from genetic testing. That may be the life saver for a group of professionals once thought to have a bright future, now facing a dim/boring one.

Richard Dawkins: an Evangelical atheist ?

In Uncategorized on April 14, 2008 at 1:07 pm

Something that should strike anyone reading, or listening to, Dawkins arguments against religion is: Being clever on hindsight is always easy.

Knowing what we know today, it is easy to see that God and religion are delusions (or faith as one might call it). Throughout history however, alternative explanations to existence has been sparse and religion has simply been the best explanation around. Consequently all known societies has had one or more Gods. Religion has been at the root of building society as we know it today, including the flaws.

Today, science builds society (including the flaws) more than religion does , – and increasingly so. Science is therefore at risk of becoming the new religion, and Dawkins may be destined for one of the new Archbishops. We should all learn from the history of religion and avoid the pitfall of discrediting and ridiculing what we cannot explain or things we currently cannot find supporting evidence for. What science cannot explain today, including any superhuman being or force, is not necessarily wrong for believers to believe in, – and who knows, evidence for some kind of a God may appear in the future when science has advanced further.

John Gray writes in “The Atheist delusion

“Zealous atheism renews some of the worst features of Christianity and Islam. Just as much as these religions, it is a project of universal conversion. Evangelical atheists never doubt that human life can be transformed if everyone accepts their view of things, and they are certain that one way of living – their own, suitably embellished – is right for everybody. To be sure, atheism need not be a missionary creed of this kind. It is entirely reasonable to have no religious beliefs, and yet be friendly to religion. It is a funny sort of humanism that condemns an impulse that is peculiarly human. Yet that is what evangelical atheists do when they demonise religion.”

Instead of concluding the obvious (that God, as explained in the bible or elsewhere, is a delusion), we should take Dawkins’ writings as strong documentation for the continuing misuse of religion to oppress and abuse. The misuse is not caused by faith or religion in itself, but rather by people claiming religious leadership and authority. Their actions are probably more a result of darwinian principles (as the struggle to excede other members of a population, – through oppression or otherwise, is a fundamental darwinian principle), than they are results of religious faith.

This last point is important to remember because science will inevitably be misused the same way, and we as conscientious scientist are obliged to fight back.

This post is an update from the previous post: Richard Dawkins being clever on hindsight

Launching SciPhu.com

In Uncategorized on April 7, 2008 at 12:55 pm

SciPhu= Science + Phusis

Phusis – An Ancient Greek word often translated as birth or nature (Wikipedia).

SciPhu.com is a blog based, open access and unrestricted publishing model. A hybrid in the spirit of Wikipedia and JustScience.

The idea behind SciPhu-publishing was to be able to publish and peer-review scientific information more efficiently than standard peer-reviewing. We wanted the reviewing process while retaining its scientific credibility, to be faster and less rigid. The answer, we found, is blogger-reviewing (which in this setting is just a fancy name for commenting on blog posts). Blogging is a good starting point since there are so many knowledgeable bloggers out there. While SciPhu may still be developed into a proper web-portal of some sort, the blog based starting point is now launched.

The end goal of SciPhu is to be able to quality control scientific information from any source, so that the twisted reality that sometimes ends up in the popular press (and ultimately in public opinion) can be promptly countered with proper accessible scientific information.

On the way towards this goal, we would like to provide a novel publishing channel for the scientific community. A way of publishing that is completely free of (any kind of) charge, less rigid, more efficient and more interactive than existing publishing models. SciPhu publishing is unlimited open-access and has the potential to reach a broad audience. At the same time, SciPhu aims be a pivotal tool to keep scientific authority intact, free and unpolitical.

Without input from (a lot of) you however, this effort will fail. Therefore, please feel free to contribute scientific content, recommend to friends and collegues or just come by to review/rate someone else’s work.

Invitation:

You are cordially invited to:

  • Write (blog) your own scientific article (or a review of a scientific topic).
  • Referee articles written by others.
  • Participate in scientific publishing in a new format.

You are invited to visit and join the SciPhu publishing community.

Combining the best of web-based medicine

In Uncategorized on April 1, 2008 at 11:35 am

It struck me while reading this article on PatientsLikeMe, ScienceRoll’s post on PharmaSurveyor and VentureBeat‘s post on health 2.0, that combining patient experiences like PatientsLikeMe with online doctors like AmericanWell must be the next step in medicine 2.0 / health 2.0. Merging the best features of these two concepts seems to me to be a killer (sic) combination. Question is how long it’s going to take the medical community to realize this.