Conference quark::human_relations-v1

    I posted this in =wn=.  This is a scary topic for me.
    
    Karen
    
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Note 160.0              Discrimination through Genetics?              14 replies
RIPPLE::KENNEDY_KA "Let Go for the Moment"          123 lines  11-DEC-1991 18:07
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Taken from the 12/91 issue of Scientific American.  Copied without 
permission.

FATAL FLAW - Who will have the right to examine your genes?

A graduate of a police academy in the Midwest was about to be hired as a 
policeman when it became known he had a family history of Huntington's 
chorea, an incurable disorder that causes physical and mental 
degeneration in middle age.  The man was told he would have to be tested 
for the gene causing the disease before he could be hired.

Such testing by employers and insurance companies is not yet common, but 
new genetic discoveries that make it possible are being reported almost 
weekly.  Researchers are rapidly expanding the list of specific genes 
carried by many healthy people that are statistically linked to an 
increased risk of acquiring one or another disease, including many 
cancers and other disorders not normally thought of as genetically 
based.

One current target for investigators is an inherited form of breast 
cancer that will develop in about one in 170 women before they reach the 
age of 50.  According to Mary Claire King, a researcher at the 
University of California at Berkeley, that statistic makes inherited 
breast cancer more common than such well-known diseases as cystic 
fibrosis and muscular dystrophy.  By analyzing the genetic constitution 
of afflicted women, King is rapidly winnowing down the shortlist of 
genes that might transmit a tendency to acquire the malignancy. When 
King or some other researcher succeeds, developing an easy-to-use test 
will be relatively simple.

King, who described her latest results in October at the 8th 
International Congress of Human Genetics in Washington, D.C., hopes her 
research will lead to ways to diagnose breast cancer at an early stage, 
when it is more easily treated.  Knowing the nature of the genetic 
changes that occur in cancerous cells might, she points out, make it 
possible to develop a blood test that would betray the presence of a 
tumor too small to be seen.

Early treatment is better treatment, and many of the scores of recent 
discoveries in human genetics can be expected to benefit patients as care 
improves.  Candidate genes for predispositions to Alzheimer's disease, 
colon cancer, liver cancer and some forms of arthritis have all recently 
been found.  Carrier and prenatal genetic screening has already led to a 
dramatic drop in the number of babies born with severe genetic disorders, 
such as Tay-Sachs disease and beta thalassemia.

But as more tests become available, their use as a screening tool is 
likely to increase.  According to a survey conducted by the congressional 
Office of Technology Assessment (OTA) and released in October, only 12 
our of 330 Fortune 500 companies reported in 1989 that they were 
conducting genetic monitoring or screening, either for the benefit of 
the employee or the employer.  More than 40 percent of the companies 
admitted that the potential cost of insuring an otherwise healthy job 
applicant would affect his or her chances of being hired.

The main reason genetic screening is not more common, the OTA survey 
implies, is that personnel officers believe the tests now available are not 
cost-effective.  Insurance companies, for their part, argue they should 
have access to any genetic information that those insured have access 
to, in order to prevent people who know they are at an increased risk of 
illness or death from buying excess coverage.  "There are already many 
examples of people who either have been denied insurance coverage or have 
had benefits limited because of dependents with genetic disorders," 
observes Paul R. Billings, a medical geneticist at California Pacific 
Medical Center in San Francisco.

Arguments over who should have access to information are not new.  In 
the 1970s blacks in many states were screened against their will for the 
sickle cell trait, and some of those who refused to be tested were 
charged higher insurance rates.  Many people who have a family history 
of Huntington's disease decline to be tested for the Huntington gene for 
fear that health and life insurance companies as well as employers might 
discriminate against them.  Another issue is whether patients' relatives 
should be given test results.

Laws to prevent the abuse of genetic information are on the books in 
eight states, points out Philip R. Reilly, executive director of the 
Eunice  Kennedy Shriver Center for Mental Retardation in Waltham, Mass.  
The Human Genome Project, the international effort to map and sequence 
the entire human genome, is often cited as a reason for enacting 
protective legislation.  Wisconsin, Rhode Island, Pennsylvania and Texas 
are all debating measures to prevent misuse of genetic data, and 
commissions in several European countries have recommended legislation 
that would deny insurance companies access to genetic information.

By 1995, the Americans with Disabilities Act of 1990 will restrict 
preemployment medical examinations so that they can be used to determine 
only an applicant's ability to do the job.  But it will not affect 
insurers.  "We may see increasing pressure to avoid the birth of 
children who will be costly to insure," says Neil A. Holtzman, a 
professor of pediatrics at Johns Hopkins Univeristy.

State assemblyman Lloyd G. Connelly of California recently sponsored a 
bill that would have prevented employers and insurers from 
discriminating on the basis of "genetic characteristic" associated with a 
risk of disease.  Although the states's insurance industry dropped its 
opposition, the California Manufacturers Association fought the bill to 
the end.  Governor Pete Wilson vetoed it in October, saying he feared it 
would impose an undue burden on employers.

A subcommittee of the House of Representatives recently devoted a day of 
hearings to uses and misuses of genetic information and also examined the 
proposed Human Genome Privacy Act, introduced by Representative John 
Conyers, Jr., of Michigan.  The bill extends the right of privacy to 
cover genetic information.  Modeled on consumer credit laws, it would 
prevent genetic information about an individual from being made 
available to third parties without the person's consent.  It would also 
give individuals the right to correct their records.

That is not protection enough, says Dorothy C. Werz, a medical 
sociologist at the Shriver Center. "The bill says almost anyone can have 
access to genetic information with the patient's consent, and one can 
coerce consent," Wertz asserts.  "It won't protect most people."

Some see the increasing availability of genetic testing - which reveals 
ever more differences between people - as posing a fundamental challenge 
to private insurance, which operates by pooling risk.  "There are 37 
million people in this country who are uninsured or underinsured," 
Billings notes.  "Our system is geared to excluding people who will get 
sick.  Until there is a fix, predictive genetic tests that identify 
presymptomatic people will make this situation worse."

                                                 -Tim Beardsley

    The human species will become extinct when the population of lawyers
    reaches a certain proportion. Before that happens, however, lawyers
    will implement the sort of genetic selection raised in the basenote,
    when THE ATTORNEYS START REPRESENTING CHILDREN SUING THEIR PARENTS FOR
    PASSING ALONG BAD GENES! "The plaintiff holds, your honor, that the
    defendents, his parents, did pass along genes which materially reduce
    his quality of life and life expectancy. The plaintiff seeks damages..."
    
    In science fiction novels, genetic screening is mandated by the
    government when population pressure is so great that there is great
    public support for extreme measures. I think we will be confronting
    this shortly in our society, as health care costs continue to climb
    through the ceiling. Someday giving birth to crack babies will be a
    crime punishable by sterilization. We cannot afford to spend $200,000
    in the first year of life for a crack baby, and let Mom go out and do
    it again (a Globe article a few weeks ago described a woman who'd
    delivered her third crack-addict baby).
    
    At present, we do genetic selection, when couples with one infertile
    partner seek germ from a third party. Sperm banks carefully screen for
    genetically-based diseases; many recruit from medical students. Donor
    egg programs are similar.
    
    In our plastic, TV-dominated society, where millions of Americans spend
    several hours per day watching to genetically-perfect (i.e. beautiful)
    stars on their televisions... I think there would be a very large
    market among the less-than-perfect. "Want your kids to look like <name
    the latest media idol>? Send $999.95 and a thermic SASE to SuperGermCo!"
    Mucho dinero, and in 2003 half the kindergarteners will look like the
    star of the biggest grossing movie of 1997!

    Less fantasically, there's the old rule that he who pays gets to call
    the tune.  If we (technically-advanced countries) decide that our
    medical costs will be paid by our governments (i.e. via taxes), then
    our governments will wind up making choices based on its own utility,
    not on our own individual utilities.  Genetic testing and restrictions
    and privileges based on genes follow naturally from this cost-based
    mindset.
    
    It means that more money will be spend on things like prenatal care,
    and less on things like organ transplants--there's a bigger payoff in
    terms of years of improved life for the population as a whole.  It also
    means arranging things so that low-payoff stuff doesn't get done at all
    (probably via long waiting lists).  This means that the government
    will want to know your genetic weaknesses where it is economically
    effective for it to base your care on that knowledge. 
    
    I also suspect we'll see real euthanasia in the next few decades: not
    just competent sick people saying "Don't feed me" as we have now, but 
    the deliberate killing of those who are unlikely to get better and are
    a burden and aren't competent enough to say "Don't kill me" loudly
    and strongly and often.  Again, it's an economic decision which makes
    sense if medical care is funded as a whole for the entire population
    of a country.  Here also the killing may not take a direct form
    (e.g. an overdose of morphine, which might be relatively humane), but
    will likely be indirect, to avoid guilt (e.g. the chronically ill can
    be moved to distant hospitals which are unfortunately understaffed and
    undersupplied and crowded and have high death rates, but the workers
    at those hosptials do really try to keep people alive: it's the lack
    of money for equipment and drugs which kills them (note: this is how
    orphanages and poorhouses used to work in the Ebenezer Scrooge days)).
    
    Public health does not mean public funding of the health care which
    individuals would buy for themselves, at least not in the long run.
    It means the public funding of health care which most benefits the
    public in general--that is, it is the care you would buy for a crowd
    of strangers.
    
    Now, I don't think this will take the form of blunt denials of service.
    It just means the HMO-izing of all medicine: lots of screening, long
    waits, difficulty of access to specialists, postponements and
    treatement reductions: medicine brought to you by the Motor Vehicle
    Department.
    
    		-John Bishop

    For an alternative perspective, one could consider that gene therapy,
    aborting fetuses with unwanted genes, life preserving machines, etc.
    are all acting to stop evolution.  I contend that evolution for the
    human race has essentially stopped.  We have stopped it in favor of the
    advantages of a society - that is we all live better because, for the
    most part, we try to build things and help each other.  Of course, I
    think we may be too smart for own good because we will eventually
    overpopulate and pollute ourselves to extinction and then the other
    species of the earth will get a chance at evolving...
    
    								
    

    Actually, we're devolving: the rate of reproduction is inversely
    related to socio-economic status in Western countries, e.g. more
    intelligence correlates with fewer children. You could argue that the
    criminal slaughter in our inner cities is selecting out those most
    disposed to violence, except so many of the dead are bystanders, and
    the chances are the dead 16-year-old has an illegitimate child or
    three, particularly if he was effective in the drug trade. Now we have
    the trend of ambitious professionals wanting to be especially prepared
    to support their children, and _whoops_ they're past the child-bearing
    age. The Pill has reversed the old rule. These days, if you are
    responsible and competent, then you are LESS likely to reproduce. In
    other times and places, the dowry or "bride price" introduced a bias in
    FAVOR of the economically capable.

	Naaaahh.  You guys are only looking at the Luddite,
	doom-and-gloom side.

	Chances are, it'll be used to good effect.  Instead of
	children suing their parents, more likely, the parents will
	be able (using some sort of gene map) to pick the best
	that their genes can offer.  They'll edit out that recessive
	for myopia, or the bad teeth that were in the family for
	generations.  They'll eliminate that breast cancer
	tendency that got all the women in the family.

	Folks, this IS evolution.  It can lead to a hardier
	humankind.  It's just controlled by directed thought and
	application of science, not cosmic-ray-induced mutation.

	For an interesting, human look at a possible future where
	man has control of his gene pool, look at Robert Heinlein's
	book, "Beyond This Horizon".

	The protagonist is the result of a "superior" gene matchup.

	He is very smart, very fast, etc., yet he is neither Nazi
	nor nebbish.  An interesting note in the story is the society's
	use of "control naturals."  These are people who are born
	without any embryonic gene-splicing techniques used.  They
	are therefore like us:  prone to balding, colds, myopia, tooth
	decay, etc.  The society pays them a handsome dividend for
	their not being born "normal."  The control factor is deemed
	important, as this is, after all, science.

	Nice, entertaining book, and it may change your outlook on
	the possibilities of this technology.

	Steve H

re: .5 (Hoyt)

>    Actually, we're devolving: the rate of reproduction is inversely
>    related to socio-economic status in Western countries, e.g. more
>   intelligence correlates with fewer children.

>   Now we have
>    the trend of ambitious professionals wanting to be especially prepared
>    to support their children, and _whoops_ they're past the child-bearing
>    age. The Pill has reversed the old rule. These days, if you are
>    responsible and competent, then you are LESS likely to reproduce. In
>    other times and places, the dowry or "bride price" introduced a bias in
>    FAVOR of the economically capable.

	Hoyt, I can only conclude that you believe that socio-economic
	status is necessarily correlated with superior intelligence and
	all-round superior genetics, and that traits like responsibility
	and competence can be inherited.

	Sounds like classism to me.  Need I remind you that Martin
	Luther King was descended from slaves, or that the Russian royal
	family, while economically strong, had certain genetic disadvantages?

	A lot of things in this world are for sale.  Good genes are not
	among them.  I don't believe that the smartest and most capable
	people necessarily end up with more money, either... or that there
	are more of them in Western countries.

		Sharon
		

    "Correlation" describes a statistical phenomenon, a description of a
    tendency within a group. It is not deterministic. The experience of a
    single individual (e.g. MLK) does not invalidate the observation. 
    
    In any event, MLK was the product of an educated, successful family. 
    That his antecedents were slaves is irrelevant, unless you're putting
    forward the thesis that slaves were genetically inferior. I'd argue
    just the opposite: only the best survived the horrible conditions of
    their cross-Atlantic voyage and life as plantation slaves. Stating that
    slavery made blacks inferior is like stating that someone sent to
    prison suddenly acquires inferior genes: slavery was imposed on the
    slaves, and the imposition didn't diminish the quality of their genes.
    
    Re classism: Surprise - it's a classist world. The U.S. is one of the
    _least_ classist societies, with much more intergenerational movement
    between classes than most cultures. Educational and entreprenurial
    opportunities enable the low to raise themselves high. Most other
    cultures impose severe limits upon those born to the wrong class, 
    caste, family, race, gender, religion, etc.
    
    Even in the U.S., though, there is a strong correlation between
    parents' socioeconomic status and that of their children. If you don't
    believe it, spend five minutes with an Intro. to Sociology text. If the
    idea that genes matter offends you, then enjoy yourself at the other
    end of the nature-nurture argument. I could care less about the
    mechanics; the fact remains that intelligence, achievement, etc. is
    _somehow_ passed to successive generations. Smart people get their PhDs
    proving such things, and most of 'em had high SES parents ;).
    
    It's my perception that the U.S. is getting _more_ classist. In the
    late 40's, millions of veterans went to college on the GI bill. In the
    60's, grants and loans and lower college costs put college within the
    reach of most. Now sky-high tuition and the sparcity of grants/loans
    make college much more the domain of the well-off. Wealth is
    increasingly concentrated in fewer hands. The manufacturing jobs which
    used to elevate high school grads to the middle-class have fled to the
    Pacific rim. Elections are now the province of pollsters and ad execs,
    as the voters get all their political information from the evil eye of
    television. The cost of TV ads means we get the best leaders money can
    buy.
    
    I think the U.S. became a great country in large part because it
    allowed those who came to these shores to reap rewards according to
    their talents. We all benefitted. I'm sorry the opportunity is going
    away.

.0> Could we be approaching a time when a new super race mentality will appear?
    
    No.
    
    Such a conclusion requires a pretty wild imagination and a good
    amount of speculation.

    re -.1
    
    	Apparently you intended "wild imagination" as an insult. I don't
    think you have paid much attention to developments in genetics. 
    	The original super race ideology grew out of social darwinism.
    German leadership bought into this before wwI. They believed that
    political and military superiority were outward signs of innate
    superiority. The fantasy of Arian superiority permeated social thinking
    even in the USA. The bias against other races is very blatent in
    Anthropological texts from the first half of this century.
    	One of the social consequences of WWII was a swing away from this
    racial jingoism to the point where it is suicidal to even suggest that
    some population may be genetically inferior.
    	The old basis for racial superiority has been thoroughly
    repudiated. However, as genetic knowledge increases, it is becoming
    increasingly clear that far more people are affected by genetic defects
    than we were able to prove  in the past. For example, I have a textbook
    in my library dating from the early 60's. It cites perhaps a hundred
    examples of known genetically transmitted defects. A geneticist of that
    period might suspect many others without being able to supply more than
    ancdotal evidence. The situation is very different today with more and
    more marginal defects coming to light.
    	I don't think it is wild to extrapolate to a situation where it is
    possible to prove that a significant number of people are passing on
    defective genes. 
    	As others have pointed out there is  great resistance to
    discriminating against individuals. I don't think we could return to
    the blatent discrimination of Nazism, but we could easily find
    ourselves in a situation where there was extreme pressure to not reproduce
    defects.
    
    
    johN

    In China they are experiencing a population explosion. To combat this
    they are limiting the number of children a couple may have. Since male
    children are much desired and female children regarded as a dismal
    failure, many female children are quietly killed as newborn infants.
    They are then reported as stillborn and the couple can try again.

    Consider the effect of giving the average person in China the ability
    to ensure the gender of any baby. Well at least it would solve their
    population explosion.

    Now what would we in the west do to our offspring. Well if names are
    any guide we would see fashion taking a big part in it. For example
    most of the baby girls in England born after Diana's wedding would grow
    up to look like her. Heaven alone knows what would happen in America.

    Jamie.

    Much of the problem (or challenge, depending on your viewpoint) is
    determining what is a genetic "defect" and what is a genetic
    "difference."
    
    Can we be trusted?  Probably not, if history teaches us anything.
    
    Karen

    	A genetic defect is a gene that either doesn't function as it should or
    functions poorly. For example an enzyme deficiency resulting in say
    obesity or acne due to poor handling of fatty acids would probably be a
    defect. A gene that correlated with better nutrient absorption and a
    resulting tendency to obesity would not be a defect.
    	Genes that cause dark skin or light skin aren't defects. They are
    adaptations to environmental conditions, providing survival benefit.
    	Problems arise when genes show both positive and negative effects.
    For example, the gene that causes sickle cell anemia when two copies
    are inherited provides increased resistance to malaria when only one
    copy is present.
    	Unless some type of cloning procedure comes into vogue where people
    choose designer embryos, a plethora of Dianas is unlikely. This is
    actually a variant of the old master race views and should be medically
    unethical if not socially unacceptable.
    
    johN
    
    	

.10>    Apparently you intended "wild imagination" as an insult. I don't
.10>    think you have paid much attention to developments in genetics. 

    That wasn't an insult at all. For what you propose to happen,
    would require the takeover of the medical community by some
    group of evildoers.

    Genetic testing is not simple, and gene splicing is a very
    specific, delicate, complicated procedure. Not something that
    can be pulled off with simple brute force.

    That's why I say a wild imagination is necessary - because the
    series of events necessary is simply incredible, in my opinion.

    Some general comments.
    
    1) Zarlenga is right, controlling this technology is not simple enough
    for simple-minded bureaucrats and bigots to exploit easily.
    
    2) The long term effects of parental choice will not lead to just one
    or a few standard types.  Cultural values are different enough that
    Diana would be beautiful only in a few societies.  Actually, we could
    reverse the homgenization that has come along with easy mobility, just
    by giving parents the opportunity to emphasize those genetic traits
    they value.  (Or do you think that everyone prefers WASP's?)
    
    3) The greatest danger to evolution is not genetic manipulation but
    good public health and reduction of performance standards in the name
    of "redressing ancient racial wrongs".  Evolution proceeds when there
    are great challenges and high failure rates, not when every problem is
    solved without individual effort.
    
    4) The result will not be a disaster nor a paradise.  We humans are
    capable of both creative problem solving and destructive problem
    creation.
    
    Dick