Decoding Raises a Double-Edged Sword on Ethics
The first draft of the entire human genome ultimately will bring a wealth of scientific knowledge about ourselves. But it could also bring a heap of trouble.
Controversial advances that push society to the edge of the scientific frontier frequently pose ethical dilemmas before public policy has had a chance to address them, bioethicists say.
In the case of public and private scientists’ announcement Monday that they had compiled all the genetic pieces of a human being, the complex and sobering ramifications will be impossible to ignore.
“It is an amazing scientific accomplishment,” said Art Caplan, director of the University of Pennsylvania bioethics center. “But, sadly, the potential value of this monumental achievement may be delayed or even lost if we do not move public policy and the law forward to respond to what science has achieved.”
Repeatedly Monday, even in the blush of triumph, world leaders--and indeed the scientists themselves--raised the potential for abuse and urged that society and decision makers wrestle with these issues before it is too late.
“As we consider how to use new discovery, we must also not retreat from our oldest and most cherished human values,” President Clinton said during a White House ceremony celebrating the achievement. “We must ensure that new genome science and its benefits will be directed toward making life better for all citizens of the world, never just a privileged few.”
Clinton also warned about privacy violations and discrimination. “Increasing knowledge of the human genome must never change the basic belief on which our ethics, our government, our society are founded. All of us are created equal, entitled to equal treatment under the law.”
British Prime Minister Tony Blair, trumpeting his own country’s role in the research, emphasized the responsibility to use it wisely.
“We cannot resist change,” Blair said, “but our job--indeed, our duty--is to make sense of change, to help people through it, to seize the massive opportunities for better health and a better quality of life and then, with equal vigor, to minimize the threats such developments pose.”
The impact of the choices that society finally makes--or fails to make--will be felt in a broad range of arenas: medical privacy, employment, advertising and even reproduction.
Some of the implications still sound like the stuff of science fiction. In this category is the specter of designer babies: What is to stop potential parents from inserting selected genes into embryos to make a “perfect” child?
“Many people would be repulsed by the idea of optimizing embryos to have tall, handsome, thin, athletic, intelligent babies who will be able to predict the stock market,” said Mildred Cho, senior research scholar at Stanford University’s Center for Biomedical Ethics. “But it’s a private matter. And that would be hard to regulate.”
More immediate are threats of genetic discrimination and invasion of genetic privacy. “There is nothing to stop those who have tissue samples or biological materials stored from going out and looking at them to see what they can learn” about the donors, Caplan said.
Even the dead are vulnerable. Although they have no legal rights, Caplan said, “their relatives and descendants have interests. There may be personal or sensitive information that they do not want revealed, such as that they were adopted, that they were born out of wedlock, that they have an unknown African American grandparent, that they are prone to depression.”
Advertisers and marketers would almost certainly be tempted to bombard consumers with promotions seeking to exploit their inevitable fears about their own genetic secrets.
“The possibility of creating anxiety and panic is not hypothetical,” Caplan said. “Are you Irish, Native American, Latvian or Korean, or do you have an ancestor who lived in Central Africa or northern Iran? Then you need to be screened to see if you are at risk of cystic fibrosis, cancer, hives, depression or muscular dystrophy.”
Many worry that new genetic information will be used by insurers to discriminate, making coverage inaccessible to those who need it the most. But some experts point out that having this information could instead prompt an overhaul of the industry to redesign the very way in which it assigns risk.
“The current premise is that you don’t know what kind of risk you bring to the pool,” said Erik Perens of Hastings Center, a research organization in Garrison, N.Y., that specializes in ethics. “This new information will take us down the road toward knowing in advance what risk we bring. So it explodes the concept of risk-based insurance.”
Cho, the Stanford ethicist, points out that genes that are close together on their chromosomes tend to be inherited together.
“What if we find out that the gene for melanoma or colon cancer is right next to the gene for red hair?” she said. “It could be that they are linked together genetically and tend to travel together.”
And that, she said, could influence the impression that people make: “You see someone with red hair and you think, ‘Hmmmmm.’ ”
On its most cosmic level, the debate raised by this stunning accomplishment could transform the way in which individuals shape their very lives.
Is genetics destiny? Will who we are--and all we are to be--ultimately be seen as based solely on billions of bits of DNA instead of on free will--our power to choose?
“In this country, we have been committed to the notion that what you do and who you become has a lot to do with the goals you set for yourself and the way you behave,” said Alex Capron, professor of law and medicine at USC. But in the new age of genetics, he said, this could be replaced by the concept that our fate “instead is sealed at the moment of fertilization.”
“It seems so neat, so clean, so seductive--and so false,” said Capron, who fears that “the full manifestation of ourselves as human, psychological organisms, living in a complex environment, with so many aspects of ourselves that arise from interactions,” will be lost, “reducing us to a string of DNA.”
Celera Genomics President J. Craig Venter, who shared in the achievement, said at the White House ceremony Monday that this psychic transformation is unlikely.
“The complexities and wonder of how the inanimate chemicals that are our genetic code give rise to the imponderables of the human spirit should keep poets and philosophers inspired for the millenniums,” Venter said.
Some genetic anthropologists also have raised the intriguing possibility that racial and ethnic distinctions, now largely based on superficial physical characteristics, will dissolve once society realizes the genetic similarities and differences within and between groups.
“We could find that we are much more related to each other than we think we are, and that there is much more variation within a group that is socially defined--like Asians or African Americans--than between the groups,” Cho said. “How will people react to that? I’m not sure.”
Decision makers will have to grapple with how best to handle what ultimately is revealed--the good, the bad and the ugly. And the time to do so has now become short.
“There is every reason to celebrate the triumph of humanity deciphering the component parts of its own biological programming,” Caplan said. “But if we are going to enjoy the medical and public health benefits that this work can bring, we must get moving quickly to build ethical and legal protections that will ensure that this knowledge will be put to good use.”
*
More on Genome
* A BEGINNING--Devising actual cures based on the human genome will involve years of research. A12
* THE ENTREPRENEUR--Celera Genomics’ J. Craig Venter has both his fans and his detractors. A12
* TEAM LEADER--The head of the public genome project is a man of contradictions, determination. A12
