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A Spectrum of Opinion: Chromosome Testing

Twenty Years Later…Just as Relevant

In the Winter 1997 issue of the Pagan Muse & World Report, we began running a forum feature entitled  A Spectrum of Opinion. The three points of view represented below are just as relevant today as they were twenty years ago when first published—say, rather, even more relevant in a day when corporate entities like Ancestry.com and 23andMe.com are advertising spit tests for the low, low price of $99…

NOTE: reprinted without change except editing for grammar and spelling from the original.

I Want to Know

by Sharon Steiner

Chromosome testing? I’m all for it. Who would not prefer to know whether the child they are carrying may have any of a number of genetic disorders that could cause problems for the child and or the family? If there is a possibility of Down’s Syndrome (significant mental retardation, minor physical effects), would it be better to abort the child, or are there resources available that would enable you to care for the child as needed? It seems to me that children have so many problems anyway, that knowingly bringing into the world one who must fight twice as hard just to stay even with their peers ranks as cruelty of the first water.

If one knew that one had a chance of developing Alzheimer’s (premature senile mental deterioration), is it not better to be able to know beforehand and take steps to have one’s affairs in such order as to enable one’s caregivers to effectively care for you when that time comes? Or to have the means available to take one’s own life before reaching the point of needing care? If one is aware of the probability of passing on to one’s children bipolar disorder or schizophrenia, would you not prefer to know and so make an informed choice whether even to have children?

Of course, there is also the possibility of using chromosome-testing information frivolously—say, to ensure that one had the smartest and prettiest child on the block. In fact, I would find this use the most likely, given the very human proclivity to vanity. For some insight into this possibility, just look at the pet-breeding industry. Some breeds of pets are fast becoming nonviable as a result of genetic manipulation.

I guess the question is whether one wants to have all information available to make informed choices, or to continue to stumble around in the dark. Admittedly, the human race has done a fair job of stumbling around: we have produced a fair lot of geniuses and we have gotten a fair piece down the road of exploring our world and ourselves. DNA testing can be another tool to find out about both. There will no doubt be a number of misuses and foolishnesses, but this is what we are here for, to explore and find out.

You Can’t Go Back

by Deborah Snavely

I come from a long, matrilineal line of women’s cancers. My great-grandmother died of breast cancer; my grandmother more indirectly, of an intestinal blockage caused by one too many abdominal surgeries, including the hysterectomy for cervical cancer. We live to ripe old ages anyway, but when it comes to death, breast or cervical cancer has been in every single woman’s life, right down to the currently living generations. My sister’s had an ovarian cyst, my mother was a 39-year breast cancer survivor, and I’ve periodically quit caffeine in an attempt to dodge the fibroid bullet.

So when I heard that they’d developed a chromosomal test for one of the contributors to breast cancer, I had to think about taking it. But it didn’t take me long to decide that it was still much too vague a definition of risk to suit me. Only a small percentage of breast cancers are genetic, according to the current research. So, if I test for the chromosome, and I come up positive, does that increase my chances of actually getting it by any amount? No. My risk is still the same as it was. But now I know that my chances are 1 in 7 instead of 1 in 8. So? Does that mean some nosey-parker health insurance company is going to jack up my premiums?

When it comes to chromosome testing like that, I’m not sure knowledge is power; it may be that ignorance is bliss! That possibly mutilated myth of Pandora and her box comes to mind: once you’ve opened the box of information—eaten of the fruit of the tree of knowledge—you can’t go back, you can only go forward. Once scientists had started theorizing how to split up atoms, those little bits of intrinsic matter once thought indivisible, it was only a matter of time before human curiosity led someone into trying out how to do it. The genie was out of the bottle.

In the same fashion, we must now deal with the rapidly increasing collection of genetic data thrust upon us by the march of science, curiosity, and that common drive to be able to fix things for people. Helping people is one of our social instincts, just as is hurting in response to being hurt. The Human Genome Project, ambitiously determined to map the entire sequence of DNA in the human animal, contributes stray new facts every week. Medical researchers meet them in the middle with chromosomal markers found to identify a particular trait or disease or predisposition. And actuarial bean-counters sniff along behind them both, noting the associations between a particular family history or genetic trait and various diseases. Why? Insurance—that juggernaut business casino that bets you you’ll live long enough to pay more in premiums than your family will get when you die. Didn’t anyone ever tell you that the house always wins? They get their percentage off the top.

In a long-winded autobiographical article last year [1996], a New York Times Magazine staffer went through a research project’s chromosome testing for a relatively rare condition that’s statistically likely (better than a 50% chance, I think it was) to affect him. It’s grouped in his family tree, so he knew it was in the range of possibilities; he’d made his will at a relatively young age. Still, this was different. This wasn’t just the odds—humans gamble every day. This was him. His genes. The test wouldn’t indicate certainty that he’d get the disorder, but it would verify whether or not he had the potentially deadly gene. The researchers provided counseling, both about the relationship between the statistical data they were compiling and what they knew about the disorder, and personal counseling to help him decide whether he wanted to hear their results—which had some small percentage for potential in- accuracy, after all. Existing methods for determining DNA details are extremely slick, to be sure, but we’re using macro tools to examine micro events; there’s almost always some small chance of the observer affecting the outcome. In the end, he decided he didn’t want to know.

It’s a position I can sympathize with: make preparations, then live every day as if it were your last.

Will Big Brother Test You, or Will You Test Big Brother?

by K.C. Anton

In a broad sense, humans have worked with genetics since the first herdsman or farmer realized that if they forced the mating of certain animals or plants, they could get a planned offspring. Through the ages this manipulation has, by its very use, determined the “nature” of this planet and the societies that reside on it.

Scientifically, we are once again at a crossroads (Hecate’s turf), where we, the people of the world, need to re-evaluate our feelings regarding this question. Genetic science, and specifically human chromosomal information, has reached the point where hard questions must be asked.

I believe every society comes to the conclusion that it “needs”; it changes what it wants into what it needs, creating an excuse for its actions, thus soothing its collective conscience. The answers a society reaches in these philosophical waters builds the direction that that society will follow for years, decades, or centuries, if it’s lucky. This pattern has been proven repeatedly; seldom has a society taken the time to choose whether the route it takes is preferred, or the ramifications understood.

The hard sciences were affected by this pattern for centuries—by religious philosophies before and during the European Renaissance. Astronomy, theoretical mathematics, and medicine are examples of what happened when men decided that they had control of themselves, their actions, their environment, and their fate. They were the center of all, until proven otherwise.

We laugh at their simplistic and obviously “unenlightened” outlook on the world. As you smile and smirk at the audacity of our grandsires, remember that we also answered these questions in our society—through the use of atomic energy, controlled livestock breeding, and agrarian genetic manipulation to produce bigger, stronger, and larger yields. Human medical inoculation and preventive medicine are only a sampling of how we have already altered our world and ourselves. We have created a world in which our own natural selection is and will be affected profoundly. This power is why genetic chromosomal testing must be looked at and consciously decided upon by the individuals in the world’s society. This issue will have far-reaching effects in the years to come; I see it as a major nexus in our societal and world history. As an example of these effects, the insurance industry already has far-reaching influence shaping our society via health, travel, lodging, and business insurance. Overall, this industry runs upon choices made by actuarial charting—the percentage or chance of a particular occurrence happening when a certain amount of the variables are known.

Insurance gambles on percentage of risk in a given situation. The more variables you can control in a situation, the more you can predict the outcome and the less of a gamble it is. With chromosome identification, you can “chart” the possible outcome of a person’s offspring much better than without. The insurance industry is very interested in chromosome testing. Should you be concerned? Possibly, if only because it is the job of the insurance industry to plan for societal trends to come, decades in the future. The rest of us have a hard time seeing where we could be next year, let alone in 2020. But think about the prospect of governmental policies:

  • keeping people from marrying because they have the potential for familial abuse.
  • denying couples children because there is a potential of passing on “unpleasant” physical or emotional characteristics.

Such restrictions are possible. Just as we now eradicate disease before it can infect a human host, chromosomal manipulation offers the possibility of eradicating cancer, viruses, mental illness, and physical infirmity.

Now is the time to consider your thoughts and feelings on all of these questions. Take action to inform others. If you choose not to share your thoughts and thus help form the world’s opinions on these questions, that’s okay. Others are acting on their decisions, too, and the world will change and be created anyway.

Afterword

Privacy in this 2018 world is rapidly evaporating. Data gathered from all sorts of sources infests how the technology we use daily interacts with us…and behind the scenes are the programmers and algorithms and actuarial analysts manipulating emotions and opinions so visibly in our world. If you choose not to believe that foreign hackers altered the results of the 2016 presidential election in the USA, you are welcome to live in your fantasy world. Alas, the rest of us have to deal with Brexit and Trump and strongman politics…which makes me, at the least, reluctant to give anyone DNA data to play with!

Hippocrates Would Be Proud

A topic revisited…

On September 22 1996, Dr. Philip Nitchke assisted at the world’s first legal doctor-aided suicide,* made possible by the Northern Territories (Australia) enactment of a voluntary euthanasia law that became effective on July 1. At the Darwin, Australia, home of Bob Dent, Nitchke connected up the retired carpenter, who suffered from advanced prostate cancer, to a computer-controlled “death machine.” Dent answered a series of questions on the computer keyboard, until it asked the penultimate one, whether he understood that a yes answer to the final question would, after 15 seconds, inject him with a lethal mixture of barbiturates and muscle relaxants. It then asked him simply, “Are you ready to die?” Dent answered yes, and died with his wife at his side.

*The Australian Northern Territories  outlawed physician-assisted suicide within before 1999.
At present, several U.S. states, and several countries around the world legally  allow either passive euthanasia (refusing/withholding life-extending treatment) or physician-assisted suicide (“death with dignity”). Oregon’s statistics, the first U.S. state with such a law, record fewer than 250 persons per year making use of this choice.

Euthanasia Is Witchcraft?

The controversial law that made this event possible is hedged with precautions: it is only available to those terminally ill, they must be evaluated by two doctors and a psychiatrist, and patients must wait nine days after evaluation before an injection can be administered. Nonetheless, the usual suspects are mustering in opposition. Clerics along with conservative doctors are mounting an effort to create national legislation outlawing the practice. Some aboriginal leaders join in because they believe euthanasia is a form of witchcraft. The belief seems to stem from an aboriginal concept that is the flip side of the Asian belief that if you save someone’s life you are responsible for it. In the same vein, according to sources familiar with aboriginal ideas, if you take someone’s life, you have taken control of his soul—and that’s witchcraft, by their lights.

Thou Shalt Do No Murder

Let’s look at that: the taboo against murder is very nearly universal among humankind. That doesn’t stop humans from killing each other in all sorts of other ways: self-defense, war, plain old accidents. Causing someone’s death directly without their permission or knowledge is taking control of them, certainly, and heinous…but what about with their permission? at their request? Curing someone is taking control, too, you see. That’s why so many Pagan belief systems teach that a patient must give permission for any healing beforehand. Requiring permission leaves control of a person’s own being in the hands of that individual.

So, are we then responsible for the soul of someone who slips—and breaks a neck—on the banana peel that missed the compost heap? That scarce commodity “common” sense, I think, would say no; you didn’t mean to, it wasn’t intentional. Intent is the key. You planned to kill him, you meant to kill him, youdid kill him; that’s first degree murder. You didn’t plan to kill him, but in a moment’s fury or despair or misery or terror, you acted and did kill him, that’s still murder, but second degree—except in self-defense. You didn’t plan to, didn’t intend to, but your actions caused his death, that’s not murder, that’s manslaughter. Thus embedded in our statutes is the belief that intent counts. It’s what you mean to do that matters.

First of All, Do No Harm

Among the initiatory mystery traditions of ancient Greece are the spiritual Eleusinian mysteries, the mathematical Pythagorean mysteries, and the medical Hippocratic mysteries. Yes, Hippocrates founded an initiatory tradition of physicians, who all swore, as M.D.’s today still swear, to “first of all, do no harm.” The traditional Hippocratic oath includes a promise not to provide “a deadly drug.” I note that there exists very nearly no drug, pharmaceutical or herbal, which can be defined as not being at least potential toxic!

That command is uncannily like the Rede—the nearest thing to an ethical “law” among witches and magic users. And their decisions and actions must, like those of magic-workers, take into account relative degrees of harm. For, if pain itself were harm, then no doctor in all of history could in good conscience cause the pain of setting a broken leg, excavating a bullet or arrow, lancing a boil, stitching a gash. Yet the consequences of such inaction will be predictably worse for the patient; so they harm the fewest the least, and go ahead with the procedure.

Heroic Measures

That same rationale, however, is applied today in cases where the outcome is no better than a crap shoot. Using toxic compounds and near-lethal radiation, doctors try to make the human (host) environment fatal to a deadly parasitical growth, no matter how much suffering the treatment causes the patient. It’s an approach similar to that of the body’s own immune reactions, when the fever, histamine, and swelling, produced to kill off some invading bug, go on to create miseries and even life-threatening conditions of their own. The question usually becomes, is the host human strong enough to survive the prescribed treatment?

In these cases, we’re at the edge of Hippocratic territory—are we doing no harm?—yet such medical action is routine today, the world over. Doctors bump heads with Hippocrates every time they provide resuscitation treatment to a patient who has documented a wish not to receive it. The reason, for it’s more than an excuse, is the law. Not taking action to preserve any scrap of life, regardless of human or dollar cost, has become more hazardous to a doctor’s livelihood than taking action. Hence, between bureaucracy and statute, doctors are squeezed into a pattern that’s only now being broken up—by too many tales of medicine gone mad.

Brain-dead hulks “live” for decades with machine and hand-tending, vacuuming up precious medial and financial resources. Experienced physicians know the system so well that they’ll have tattooed on their sternum the words “no code”—hospital slang for “do not resuscitate, the patient has signed the papers”—only to awaken attached to machines, with broken ribs and a week-long life expectancy, because “it’s not a legal document.” No wonder the world fears medicine—the prospect of surviving can be infinitely more terrifying than the prospect of death.

Punishing the Dead

Christianity judges everyone, even the dead. It is from Christian medieval teachings that some of our weirder laws spring, such as the law that makes it a crime to commit suicide (Christianity is built around a final judgment). Medieval suicides were denied Christian burial for committing the mortal sin of self-murder…unless they did so while insane. This heartless practice—for denying religious services undoubtedly hurt the surviving family, while damage to the deceased is debatable—led to the routine practice of declaring suicides to have taken action while “of unsound mind”—a euphemistic convention that allowed for funeral and burial according to local custom. Some 19th-century wit said that suicides were deemed “of unsound mind” because any other conclusion would cast doubt on the soundness of mind of those who choose to remain among the living.

Limiting Choices

Modern psychiatry would have it that suicide attempts are commonly cries for help; but what of the successes? What of the 88-year-old man and his 85-year-old wife who quietly take a “Final Exit” rather than be forced by infirmity, bureaucracy, and insolvency out of their 35-year home? What of an advanced AIDS patient whose disfigurement and disability has cost him his assets, his home, and his friends? What of the young pregnant girl, cast off by a “God-fearing” family to the mercy of the streets? What of the cancer patient, untreatable beyond continuing toxics and pain-killers, unable to pursue the activities that make life life? What of social pariahs who, like Socrates, choose a cup of hemlock over exile from their life’s meaning? And what of society’s prisoners, who face that most personal of violent crimes, rape, while imprisoned; is it societal concern, or vindictiveness, that dictates such elaborate precautions against inmate suicide?

Control and Consent

These questions all relate to the issue of controlling one’s destiny. Regardless of my belief of what is right for you, I should not dictate—nor should society. Mr. Dent of Darwin chose to exit peacefully, with assistance, maintaining control of his life and his death. My late uncle chose to go on living as long as it worked; yet, in the end, he, too, chose “no heroic measures.” For a man afraid of death, as my uncle was—who might have lived months longer, medicated and hospital-bound, periodically losing parts to surgery—was this suicide? Perhaps. He died naturally the night before his transfer to a hospice; after less than a week in hospital. Yet we learned that he had refrained from using prescribed morphine for a year before he died. What pain one may survive with fortitude, another may find unendurable. But each—Mr. Dent and my uncle—made his choice, kept control, and gave consent.

To Relieve Suffering

In September 1996, Dr. Nitchke told the press that Bob Dent sought to end his suffering by dying, and that his role as doctor was to listen to the patient, and to try to act to relieve that suffering. In the end, Nitchke made Dent’s suicide possible. So did the person who wrote the controlling software program. So did the people who passed that law, the first to be put to use.

Hippocrates would be proud.

This blog entry originally appeared in the Pagan Muse & World Report Winter 1997 issue as the column “Conversations Over the Forge.” Slightly updated, it remains largely as written.

 

The Northern Sky…

My room faced north, on the northern edge of a valley where the range of “hills” (mountains if one is anywhere but on the West Coast) northward was populated solely by native oak & grasses…and the few cattle that grazed them. The nightly vista of northern sky out my windows granted me a truly stellar view. The northern hills shielded my view from light pollution, so that the northern California clear skies granted me a decade of watching the Great Bear and Small Bear and Lady in the Chair and the milky star-flood of our own galaxy wheel around the Pole Star and across the northern sky…

Twenty-odd years later, when I first heard the Celtic goddess Arianrhod described as Lady of the Silver Wheel, that wheeling star-scape flashed vividly before my mental eyes. Many years later, an elder told me the “Silver Wheel” referred to the moon…yet in Welsh lore, Caer Arianrhod is the Welsh name of the constellation we call Corona Borealis, the northern crown. And as the Wicca know, the north is the place of power.

Orion-rising

Orion’s key stars are emphasized in this image.

Those northern night skies led me out to explore the night in the other quarters of the compass…where I rapidly discovered the truth of light pollution (Santa Rosa to the south & southwest, with habitation & its lighting creeping south-eastward along highway 12 towards Sonoma). The eastern view from the front porch was almost equally shielded from Hwy 12 hamlet lights by the last of the “hills” that marched down from Calistoga Pass, so that the eastern sky well above horizon granted me superlative views of autumn’s annual, stately arrival of Orion’s masterful figure, the Hunter stalking in to rule the dark skies of winter. And that led my gaze upwards to zenith, where I found the Seven Sisters—the Pleiades, clustered together as the sisters, traditionally, flee ahead of the dread Hunter and his wild hunt. Chasing the Hunter across dark-time skies from harvest to springtide, I learned other recognizable constellations—the “teapot” of Sagittarius that outlines the centaur’s drawn longbow, the aforementioned Northern Crown (which crosses high in the sky in the northern temperate latitudes), and gradually a few of the summer stars, too—most notably, Cygnus the Swan,  which constellation fills much of the Summer Triangle of vivid stars.

Cygnus-Northern-Cross-Summer-Triangle