NextMichael Crichton finished his novel Next in 2006.  The novel explores the ethics of bio-engineering, genetic research, and the use of human tissue.  I don’t know what has happened in this area since 2006.  I suspect that the issues Crichton raised are still unsettled.  The book is typical Crichton so I’m not going to say much about the novel.  Instead I would like to discuss the Author’s Note that describes some of Crichton’s conclusions.

1.  Stop Patenting Genes.

The first conclusion describes a point of law that I had not been aware of but that makes sense to me.

. . . genes are facts of nature.  Like gravity, sunlight, and leaves on trees, genes exist in the natural world.  Facts on nature can’t be owned.  You can own a test for a gene, or a drug that affects a gene, but not the gene itself.  You can own a treatment for a disease, but not the disease itself.  Gene patents break that fundamental rule.  [emphasis is mine]  Of course one can argue about what’s a fact of nature, and there are people paid to do that.  But here’s a simple test.  If something exists for a million years before the arrival of Homo Sapiens on earth, it’s a fact of nature.  To argue that a gene is in any way a human invention is absurd.

Consequences of gene patenting?

. . . research on SARS (Severe Acute Respiratory Syndrome) was inhibited because scientists were unsure who owned the genome – three simultaneous patent claims had been filed.  As a result, research on SARS wasn’t as vigorous as it might have been. That should scare every sensible person.  Here was a contagious disease with a 10 percent death rate that had spread to two dozen countries around the world.  Yet scientific research to combat the disease was inhibited – because of patent fears.

2.  Establish clear guidelines for the use of human tissues.

Historically, the courts have decided questions about human tissues based on existing property law.  In general, they have rules that once your tissue leaves your body, you no longer maintain any rights to it.

The notion that once you part with your tissue you no longer have any rights is absurd.  Consider this:  Under present law, if somebody takes my picture, I have rights forever in the use of that photo.  Twenty years later, if somebody published it or puts it in an advertisement, I still have rights.  But if somebody takes my tissue – part of my physical body – I have no rights.  This means I have more rights over my image that I have over the actual tissues of my body.

3.  Pass laws to ensure that data about gene testing is made public.

New legislation is needed if the FDA is to publish adverse results from gene therapy trials.  At the moment, it cannot do so.  In the past, some researchers have tried to prevent the reporting of patient deaths, claiming that such deaths were a trade secret.

. . .

Review studies conducted by those who have a financial or other interest in the outcome are not reliable because they are inherently biased.  That fact should be addressed by an information system that does not permit biased testing, and takes steps to ensure that it does not occur.  Yet gross bias remains far too common in medicine, and in certain other areas of high-stakes science as well.

4.  Avoid bans on research.

Bans can’t be enforced.

5.  Rescind the Bayh-Dole Act.

The Bayh-Dole Act of 1980 permits

university researchers to sell their discoveries for their own profit, even when that research has been funded by taxpayer money.

As a result of this legislation, most science professors now have corporate ties – either to companies they have started or to other biotech companies. . .   Thirty years ago, disinterested scientists were available to discuss any subject affecting the public.  Now scientists have personal interests that influence their judgement.

Secrecy now pervades research, and hampers medical progress.  Universities that once provided a scholarly haven from the world are now commercialised – and the haven is gone.  Scientists who once felt a humanitarian calling have become businessmen concerned with profit and loss.  The life of the mind is a notion as quaint as the whalebone corset.



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