17 April 2008

from Lawrence, Pub Philosophy Group, Sunday meeting: Genetic discrimination

Dear friends,

Last Sunday I was talking to one of our friends after the meeting about
a delicate matter that arose at his place of work. It occurred to me
that his best option was to have a friendly chat with a lawyer as a
precaution and made to suggest some course of action; maybe the
situation does not involve the law, but it is good to have an idea of
the implications about certain things. If you think you can be that
friendly lawyer I will put both of you in touch. And if you want more
details I can also give you a general idea of what the situation is. In
any event thanks.

This Sunday we will be discussing Genetic Discrimination. And although
this is quite an old problem, maybe today this type of discrimination
might have long term repercussions beyond the quarterly figures of a
company's balance sheet or the budget of a health care centre.

And if you know whether something big is planned on the sports front for
Sunday evening please let me know.

Take care




TINA Flat http://picasaweb.google.co.uk/photosphilo/TINAFLAT

**********HOLIDAY FLATS**********
Mayte; Almería (Villa de Níjar);


Paloma; Marbella (near Elviria);


+++++++++MEETING DETAILS+++++++++
SUNDAY 6.00pm – 8.30pm at Molly Malone's Pub, probably downstairs----
-Email: philomadrid@yahoo.co.uk
-Yahoo group >> philomadridgroup-subscribe@yahoogroups.co.uk <
-Old essays: www.geocities.com/philomadrid
- Blog: http://philomadrid.blogspot.com/
-Group photos: http://picasaweb.google.com/photosphilo
-My tel 606081813
-metro: Bilbao : buses: 21, 149, 147

Genetic discrimination

Genetic discrimination is not new. In fact the first living system that
was (un)selected out of existence was the first victim of genetic

So when a person chooses their partner on the basis of looks, height,
health, social standing and similar criteria they would be doing some
old fashioned genetic discrimination. We personally do not have a say
nor influence on how we look or how healthy we are (self abuse
excepted). So any selection criteria based on these factors would indeed
be genetic discrimination.

Discrimination itself, would mean excluding someone on purely arbitrary
criteria and in many cases based on prejudice. Such criteria or
prejudice could be, for example as we all know, race, looks, religion,
birth circumstance. Of course, the emphasis here is on the meaning of
arbitrary or prejudice rather than excluding.

In an ideal world, a job selection process should not exclude people
because of their race or looks, but should include people on merit and
qualification. However, we are not likely to complain too much if a
religious group excluded us from their ceremonies purely on the grounds
that we do not belong to that religious group. It might not be in the
spirit of what a religion ought to be, but there is nothing irrational
or unreasonable about it. But to be excluded from a job purely on
grounds of race or looks, we just find this repugnant.

Discrimination, has a long and evolving history. The question we might
be tempted to ask ourselves here is, what conditions caused genetic
discrimination to evolve from (un)selecting one of the first living
systems to discriminate against someone because of their looks or race?
Surely, at some point genetic discrimination stopped being a natural
process and became an ethical issue; let us call this point C even if we
do not know when or where it happened. Maybe this happened at the very
point when we started adopting ethical principles. Maybe adopting
ethical principles was itself a clever evolutionary strategy to
(un)select certain living systems out of existence.

A further look at the old style discrimination involved what we might
call face-value information. A person who was born in Africa into a
family belonging to an old tribe would be easily identified as not a
member of the European or Asian community. Someone who is five feet four
inches tall is clearly not a tall person and someone who looks jaundiced
is clearly not in the best of health. However, our face
value-information might not help us to answer many questions we might
want when deciding whether to cooperate with a person or not; by
cooperate I am thinking in terms of survival type of cooperation. Being
a partner, an employee or a friend. For example, the arbitrary colour of
one's skin is not indicative of one's intelligence, height is not
indicative of managerial skills and pale complexion is not by itself
indicative of a contagion.

Before point C, above, it did not matter whether someone with a dark
coloured skin was intelligent or not. What mattered was that one
associated or cooperated with someone from one's own race. Nor did it
matter whether a short person was also a good warrior, warriors were
supposed to be above average height so who ever decided these things
just moved on to the next person. Even accepting my crude and sketchy
description of how the world might have been like in the distant pass,
it is self evident that at least this crude selection process now had a
new competitor on the block. Ethics became a competitor to brute force
or prejudice.

The implication of this new scenario is that face-value information lost
some of it currency in the real world. Today, some countries, have
stringent laws against race discrimination or discrimination because of
religious or even philosophical beliefs. There are no societies (maybe a
few) who would imprison someone because they believed the world was
round or for that matter because they believe the world was flat.

What has clearly happened after point C is that the information we
needed for a selection process became more complex. And in many cases
face-value information was displaced by moral-value information (merit
or qualification). However, in the real world face-value information is
cheaper than moral-value information which makes face-value information
quite a powerful incentive to keep on using it. Free is a difficult
price to beat*.

So why is genetic discrimination important today? And is it a relevant
issue? But before addressing these questions, let me introduce these two
hypothetical cases.

The first philosophical reason why genetic discrimination is relevant is
because today, for the first time in the history of this planet, we have
first hand knowledge and information of genetics and the genetic package
of people. Today, we no longer have to rely on face-value information
nor ethical information. This is truly an information age about life on

Another reason is because genetics affects us all, rich or poor, tall or
short, upper class or middle class etc. Genetics are a powerful
equalising force amongst humans and animals. Maybe in the past we saw
tall people as being healthier than short people, they might have been
but today we know better. Good looking people might have made better
partners than less attractive one, but we also know that this is not the
case. Genetics cuts through all this arbitrary criteria, what matters is
whether we can pass on our genes to the next generation or that we live
long enough to reach reproductive age. Anything else is fine tuning and
strategy by the living system. Which explains why people of whatever
looks or background still manage to have families. But most of all we
can all be victims of ill health, including illnesses due to
malfunctioning genes.

Another reason is that societies and governments are putting more
emphasis on quality of life rather than quantity of life. Of course this
has it own implications least of which some communities need topping up
with new people from time to time. And by definition quality of life
means attending to the needs of individuals rather than simply
reproducing more to keep the species going.

Maybe the modern use of genetic discrimination became official when in
1996 the US Congress passed into federal law the Health Insurance
Portability Act. Amongst its various provisions this act made it illegal
for insurance companies to discriminate against someone on the grounds
of genetic information. Of course, this act had some exceptions, but
check Google for more details.

I won't be discussing any specific legislation for two main reasons.
There is enough material on the internet that is readily available and
secondly because legislation tends to take the form of prohibiting or
making certain behaviour illegal. As I hope to show and argue, although
such prohibition is always welcomed, it is still flawed thinking.

There are two major concerns that preoccupy Americans today, and
therefore by implication should also preoccupy us because bad habits
tends to travel as much as good policies.
1) Genetic discrimination is an important issue in health insurance.
2) How employers can discriminate in their employment policies.
3) A third concern, that maybe is more appreciated by the medical
community, is that some people are now reluctant to participate in
clinical trials and studies just in case new information about their
genes come to light and has to be reported to an insurance company.
In most European and in many developed countries health services are
provided by the government and free at the point of demand. This might
explain why maybe in Europe, genetic discrimination is not such a big
issue, unlike the USA.

The bulk of health care in America is paid for by insurance companies.
And although the various levels of government in the USA spend a lot of
money on health care, a large part of the population does not have any
health cover or adequate cover. According to the US Census Bureau about
15.8% of Americans in 2004 did not have health cover (Wikipedia: Health
Care in the USA). Most people are covered by their employer's insurance
and a large part are supported by the state (44% also including local
and federal government support). However, the model seems to be you pay
a premium and you get health care when you need it. Why the US health
model should also be relevant for us will become clearer later.

I am particularly interested in two aspects of a hypothetical health
insurance contract or policy: 1) The nature of risk involved in health
insurance and 2) the concept of utmost good faith that is a key factor
in insurance contract. As you know the reason why insurances are a very
good and vital businesses for society is because they aggregate
individual risks and share them amongst a large part of the population.
It would probably be physically impossible, at least for the vast
majority of the population, for an individual to cover all his or her
risks through their own resources. But a large number of individuals
responsible for a small share of the aggregate makes ones private risk

Therefore, the idea of an insurance policy is that I pay an insurance
company a premium for assuming my personal risk. For example, I insure
my car against collision, fire and theft. And if my car catches fire the
insurance will pay for its replacement. However, having such insurance
cover it does not give me or anybody else the right to go and burn their
car or crash it into the nearest wall just for the fun of it. A
reasonable person is expected to take care of our car and a reasonable
insurance company expects people to take care of their car. Of course,
in the event of an accident we expect the insurance to pay up.

However, I submit that a health care insurance cover does not follow
this model of relationship. I submit that someone taking out an health
insurance policy does not do so on the basis of, "just in case they will
need health care." I submit that people take out a health insurance
policy because they "expect" to need health care. I would very much like
to see the reaction of an insurance sales person when someone tells them
that "they expect to crash their car into a wall." But that aside,
people have good reasons to "expect" to need health care in their life.

We have all fallen sick or ill sometime in our life; we all needed to
see a doctor or go to a hospital for some sort of treatment. We also
have or had family members who needed some sort of health care. Or we
know of friends, colleagues, or neighbours who needed some sort of
health care. I challenge you to find someone in Madrid, London, New York
or which ever city you care to mention, who does not know of a person
who did not need some sort of health care in that person's life. I would
therefore argue that a health insurance policy is based of a fatal flaw
that renders the logic of health insurance invalid. The consequence of
which we have genetic discrimination as I will try to show.

But the logical conclusion of "we expect to need health care sometime in
our life" is not that some people are healthier than others, but rather
that the very vast majority of the population will need or do need some
sort of health care. And those who have never needed the services of a
health carer are either lost in a desert or are an anomaly of nature in
which case health carers need to see them. But to clarify my position
further, I am not saying that because one of my parents died from a
genetic disease and needed health care, and so il will also need health
care. Or my friend who was involved in an accident and they had to go to
the E & A unit so even I will need health care. What I am saying is that
even if we took all the precautions that we can possibly take and tried
to live as healthy as is physically possible, we will still need some
sort of health care or attention. Even if only to confirm that we are
the healthiest living system in the universe. Sooner or later we will
need the services of a health carer.

So whether we do this "expecting" consciously or not, we expect to need
health care in our life. Does this mean that health insurance companies
have missed something? Clearly they haven't because most of them run a
very thriving business. So where is the discrepancy?

First of all those who do not have enough money to pay or are in a
position to have their health insurance policy paid for go without
health cover. In the USA this amounts to about 16%. I do not use these
figures as evidence of anything but as information that can help us put
our thinking is some sort of worldly perspective. Nor am I using these
figures as a criticism of the American system. All systems have flaws in
their health care programmes. As I have already pointed out there is a
fatal flaw in all the political systems when considering genetic
discrimination by legislating to prohibit it. The reason why I am using
these figures from the USA is because it seems ironic that they are
honest enough to publish such damning figures, and that must count for
something. And also because genetic discrimination is first and foremost
a big issue in the USA.

Thus health care insurance companies are not covering a very large part
of the population which incidentally is also the largest part of the
population that needs health care or uses health care the most. But what
is even more important is that the state is paying for the health care
of 44% of the population. The point here is that health insurance
companies are not only selective but cover a large part of the
population who need less health care than the population they do not
cover. All this is well documented so I won't give references here,
there are too many.

Therefore, although we see health insurance as a payment for our health
care when we do need it, insurance companies are doing what they do
best, spreading aggregate risk. Except that the risk that is covered is
from the top 60% percent of the population who not only pay for their up
keep but are also manageable risks. I assume that insurance companies
know what they are doing and I assume that no reasonable person would
jump into a black hole when they do not know what the risks are.

This brings me to the second most important aspect of an insurance
contract: utmost good faith. This principle as you know, is up there in
the corridors of ethical propriety together with gentlemen's agreement
and the clean hands of equity. This if I take out a car insurance policy
and I know for a fact that my neighbour wants to set it on fire because
two years ago I stepped on the tail of his cat, I have a duty to tell
the insurance company that my neighbour has threatened me many times in
the past to burn my car. Or if I want to insurance my best Rembrandt but
do not tell them that I intend to keep it in the garden shed the
insurance company would be justified in being annoyed. The insurance
company of course is also duty bound, by the same principle, to tell me
whether they can insure my car given the circumstance of my neighbour's
intentions or my Rembrandt given my eccentricity.

I will submit that genetic discrimination is a direct of effect of the
principle of utmost good faith. It is one thing to assess the risk of a
ship coming from India laden with tea and spices and not arriving in the
Port of London within the next five months and another to assess the
risk of person A having gene X and this gene has been statistically
associated with disease D. If insurance companies stopped insuring tea
cutters coming from India maybe people would have found another way to
transport tea and spices from India. But if insurance companies stopped
insuring someone with gene X then there is nothing that person can do
about it.

But if a health insurance company is going to exclude someone because
they have gene X then they ought to exclude everyone that has gene X. In
the same way they exclude all transport vehicles in a war zone. But
unlike war zones or aggrieved neighbours, we can probably find a gene
that may or may not be a cause of some disease or whatever in all of us.
And the conclusion of this slippery slope reasoning would be to exclude
all the population from health cover because everyone might have
something wrong with them. Genetic discrimination is none other than a
botched up attempt at squaring the equivalent of the health insurance

The first reason why an attempt to legislate prohibiting genetic
discrimination is flawed is because the concept of a health insurance is
itself flawed. The needs of the population and those of the insurance
companies are incompatible, unlike say the needs of a health care worker
and a patient their needs are complementary. One has chosen to develop
their talents and skills by providing care to those who are sick and a
patient needs the care of a health carers. They are in a win-win
situation. An event that is practically certain is not just a probable
risk but also a practically certain event; we have practically certain
needs for health care. Thus legislation cannot fix something that is
inherently contradictory or incompatible; it is fixing the wrong problem.

Secondly, as I said earlier, free is a difficult price to beat. So an
attempt to prohibit genetic decimation does not necessarily lead to no
discrimination. For example, insurance companies might increase their
premiums, offer less cover, find more reasons to void a health care
claim or whatever. Prohibition is not a synonym for "we're all better
off now." Thus an insurance company, for example, might not use genetic
results against someone, but it might increase the premiums to an employer

Earlier I said that governments and societies are today more concerned
with quality of life and the spate of social legislation is evidence of
this. But having a big part of a population without health cover is
incompatible with the concept of quality of life. What is the point of
prohibiting smoking in public places if 16% of the population do not
even have basic health care? (pensions, social security etc) Ironically,
it is this 16% group that needs to give up smoking because when they do
need the health care to deal with the effects of their smoking they are
the ones who do not have health cover.

The first thing a government ought to do is to introduce a really
universal health care system and not simply to legislate against genetic
discrimination which in any case only affects 60% of the population, at
least in the USA. The other 40% either do not have any health cover or
are at the mercy of a bureaucracy. Of course, providing a universal
healthcare system, free at the point of demand, is not easy nor cheap.
However, companies such as insurance companies are ideally place to cut
down inefficiencies and bureaucratic delay not to mention they can
better manage risks and opportunities. But that is another issue.

But the main reason why genetic discrimination is abhorrent, apart from
it being discrimination, and why the prevailing system is inadequate for
today's needs, is that genetics are now our primary sources of
information that will help us in our quest for quality of life. I am not
saying that genetics is a panacea for everything but that genetics is
our first source of information about human beings.

Genetic discrimination is also an ethical issue of a different kind. By
using genetics information against people who might need help most
companies and societies are intentionally excluding valuable information
from our medical knowledge of diseases. Information that can help people
achieve that very quality of life governments and societies have set
themselves to provide us with. Furthermore, genetic discrimination in
this context amounts to tampering with our collective genetic and
medical knowledge.

But nobody ought to have the right to distort our medical knowledge
because that knowledge belongs to the whole community. That knowledge
came from members of the community who were sick. And directly or
indirectly the information and knowledge accumulated from their
unfortunate circumstance is not helping the rest of us and future
generations. If it is a crime to go about removing traffic signs around
a city, what should be done to those who intentionally tamper or distort
medical knowledge?

Finally, what genetic discrimination tells us is that the more
sophisticated our survival strategy becomes, the more we encounter
complex philosophical questions. Could it be that ethical-value
information is dead and replaced by genetic-value information?

Take care


* not my original idea, there are many versions of this concept, but
Google only had this version on SNK Neo Geo chat group.

from Lawrence, Pub Philosophy Group, Sunday meeting: Genetic discrimination

No comments: