Fertility specialists question whether they should test embryos for a newly discovered breast cancer gene, potentially allowing parents to pick a child without that type of cancer risk.
Parents are asking whether they should test their children for genes that won't cause disease until adulthood - and can't be prevented. Patients are wondering how to keep frightening test results from causing their health and life insurance to be canceled.The biotechnology industry is starting to grapple with such questions, hiring ethicists and polling the public to determine where and how companies should draw the line on potentially profitable but ethically troubling discoveries.
"The public is wary," said Carl Feldbaum, president of the Biotechnology Industry Organization, which brought some 3,000 industry executives and scientists to its annual meeting this week to debate ethical issues. "We are asking what things people think are unacceptable, and we are listening."
Biotechnology is a young but fast-growing industry, with 40 medical technologies and 21 agricultural products on the market.
Yet companies already have faced ethical controversy. Religious leaders have denounced scientists for acquiring patents on genes they discover, saying no one can "own" genes. Critics protested a biologically engineered hormone to boost cows' milk production, saying it might promote infections.
And Congress only now is grappling with how to keep genetic test results private so patients don't face discrimination because they inherited certain disease risks.
But as scientific discoveries expand doctors' knowledge and power over biology, companies are taking a hard look at how far they can go vs. how far they should go.
Gene testing of embryos is just an example of the dilemma. University of Pennsylvania bioethicist Arthur Caplan says fertility clinics keep asking his opinion on testing embryos for the BRCA-1 gene that puts about 5 percent of women at risk for inherited breast cancer - even though the test is still experimental in adults.
"That question's going to explode as more genes for traits and disorders are identified," said Caplan, who on Monday urged companies to be cautious in developing such tests. "If you have sufficient traits you can test for, some people may want to have (test-tube) babies not because they're infertile but because they're selecting for traits."
The nation has "never found an easy balance between profit-making and ethics-making," said W. Steven Burke of the North Carolina Biotechnology Center. "Whether that is doable with biologically based products I think remains to be seen."
Companies are hiring outside ethicists and lobbying for genetic privacy laws. The Biotechnology Industry Organization has conducted meetings in eight states so far, asking members of the public what research should not be pursued.
"They did not want the technology used to create basketball stars" or raise anyone's IQ, Feldbaum said of the poll results.
Even school students may join the debate. The Pennsylvania Biotechnology Association just mailed teachers nationwide a magazine, partly funded by the Education Department, that teaches genetics basics and then asks: "Suppose your parents want to have you tested even though you might become dangerously depressed if you knew you had" a fatal gene?
The Hastings Center, an ethical think tank, just began raising $750,000 to help industry and doctors address the dilemmas. High on the list is delineating when biotechnology is a treatment or merely a way "to make you better than well," ethicist Mark Hanson said.
Already doctors are questioning using drugs like Prozac to treat depression instead of helping patients be more assertive, he noted. And if parents want to use treatments for dwarfism to give an average-sized child a few more inches, well, studies have shown taller people tend to succeed more often, he said.
"We are running into a fuzzy line," Hanson said.