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!

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