Mindbend

PROLOGUE

FETAL RESEARCH BANNED

New Regulations for Medical Research

By HAROLD BARLOW

Special to The New York Times

WASHINGTON, July 12, 1974-President Richard M. Nixon signed into law today the National Research Act (Pub. L. 93-348). The law calls for the creation of a National Commission for the Protection of Human Subjects in Biomedical and Behavioral Research. There has been growing concern about the ethics of research involving children, retarded persons, prisoners, the terminally ill, and particularly fetuses.

It is hoped that by creating appropriate guidelines some of the shocking abuses that have been exposed of late can be obviated, such as the purposeful infecting of a large number of retarded children with hepatitis in order to study the natural progession of the disease, or the discovery a few months ago at a Boston hospital of a dozen dismembered aborted fetuses.

The first phase of implementing the law includes a moratorium on “research in the United States on a living human fetus, before or after induced abortion, unless such research is done for the purpose of assuring the survival of such fetus.” Obviously the fetal issue is intimately tied to the highly emotional abortion issue.

Response to the new legislation in scientific circles has been mixed. Dr. George C. Marstons of Cornell Medical Center welcomed the new law, stating that “guidelines for ethical behavior in human experimentation are long overdue. The competitive economic pressure for research breakthroughs creates an atmosphere where abuse is inevitable.”

Dr. Clyde Harrison of Arolen Pharmaceuticals disagreed with Dr. Marstons, saying that “anti-abortion politics are holding science hostage, preventing needed health care research.” Dr. Harrison went on to explain that fetal research has resulted in many significant scientific gains. Among the most important is a possible cure for diabetes. Fetal tissue injected into the pancreas has been proven to repopulate the islet cells that produce insulin. Equally important is the experimental use of fetal tissue to heal previously incurable paralysis resulting from spinal cord injuries. Injected into the site of the trauma, the tissue causes spontaneous healing by generating growth of new, healthy cells.

It is too early to judge the impact of this bill until the various commissions mandated by law make their recommendations to Secretary Caspar Weinberger. In the area of research the new law will have an immediate impact by severely limiting the supply of fetal tissue. Apparently planned abortions have been the primary source of such tissue, though it is not known whether or not this need played a role in doctors’ decisions to abort.

NOVEMBER 27, 1984

JULIAN CLINIC, NEW YORK CITY

Candice Harley felt the needle pierce the skin of her lower back, followed by a sharp burning sensation. It was like a bee sting, only the pain rapidly evaporated.

“I’m just putting in some local anesthetic, Candy,” said Dr. Stephen Burnham, a swarthy, good-looking anesthesiologist, who had assured Candy that she was not going to feel a thing. The trouble was that she had already felt pain-not a lot but enough to make her lose a certain amount of faith in what Dr. Burnham had told her. She had wanted to be put to sleep. But Dr. Burnham had informed her that epidural anesthesia was safer and would leave her feeling better after the abortion and the sterilization procedure were over.

Candy bit her lower lip. There was another stab of pain. Again it wasn’t severe, but she felt vulnerable and ill prepared for what was happening. At thirty-six, Candy had never been in a hospital, much less had an operation. She was terrified and had told Dr. Burnham as much. She felt the burning sensation again, and by reflex she straightened her back.

“Don’t move now,” admonished Dr. Burnham.

“I’m sorry,” blurted Candy, afraid that if she didn’t cooperate they would not take care of her properly. She was sitting on the side of a gurney in an alcove next to an operating room. A nurse was standing in front of her and to the right was a curtain which had been pulled to isolate the alcove from the busy OR corridor. Behind the curtain, Candy could hear muted voices and the sound of running water. Directly ahead was a door with a small window through which she could see the operating room.

Candy’s only covering was a flimsy hospital gown, open in the back where the doctor was busy doing whatever he was doing. He had elaborately explained to Candy what was going to happen, but her ability to concentrate was severely limited by the intimidating surroundings. Everything was new and frightening.

“Tuohy needle, please,” said Dr. Burnham. Candy wondered what a Tuohy needle was. It sounded awful. She heard a cellophane package being torn open.

Dr. Burnham eyed the three-inch needle in his gloved hand, sliding the stylet up and down to make sure it moved freely. Stepping to the left so that he could make sure that Candy was sitting straight, he positioned the needle over the area he had injected with the local anesthetic.

Using both hands, he pushed the needle into Candy’s back. His experienced fingers could feel the needle break through the skin and slide between the bony prominences of Candy’s lumbar vertebrae. He stopped just short of the ligamentum flavum, the barrier covering the spinal canal. Epidural anesthesia was tricky and that was one reason Dr. Burnham liked to use it. He knew not everybody could do it as well as he could and that knowledge gave him satisfaction. With a flourish he pulled out the stylet. As expected, no cerebrospinal fluid came out. Replacing the stylet, he advanced the Tuohy needle another millimeter and felt it pop through the ligamentum flavum. A test dose of air went in easily. Perfect! Replacing the empty needle with one filled with tetracaine, Dr. Burnham gave Candy a small dose.

“I feel a strange sensation on the side of my leg,” said Candy with concern.

“That just means we’re where we are supposed to be,” said Dr. Burnham. With deft hands he removed the syringe with the tetracaine and then threaded a small plastic catheter up through the Tuohy needle. Once the catheter was in place, he removed the needle. A piece of paper tape went over the puncture site.

“That’s that,” said Dr. Burnham, stripping off his sterile gloves and putting a hand on Candy’s shoulder to urge her to lie down. “Now you can’t say that hurt very much.”

“But I don’t feel the anesthetic,” said Candy, fearful they would go ahead with the surgery even if the anesthetic wasn’t working.

“That’s because I haven’t given you anything yet,” said Dr. Burnham.

Candy allowed herself to be lowered to the gurney, the nurse helping by lifting her legs, then covering her with the thin cotton blanket. Candy clutched the cover to her chest as if it would afford some protection. Dr. Burnham fussed with a small plastic tube that snaked out from beneath her.

“Do you still feel as nervous?” questioned Dr. Burnham.

“Worse!” admitted Candy.

“I’ll give you a little more sedative,” said Dr. Burnham, squeezing Candy’s shoulder reassuringly. While she watched, he injected something into her IV line.

“OK, let’s go,” said Dr. Burnham.

The gurney with Candy on it rolled silently into the OR, which was bustling with activity. Candy’s eyes scanned the room. It was dazzlingly white with white tile walls and floor and white acoustical ceiling. X-ray view boxes lined one wall, futuristic electronic monitoring equipment another.

“OK, Candy,” said the nurse who’d been helping Dr. Burnham. “We’d like you to scoot over here.” She was on the other side of the operating table, which she patted encouragingly. For a moment Candy felt irritation at being ordered about. But the feeling passed quickly. She really had no choice. She was pregnant with an eighteen-week-old fetus. She preferred to use the word “fetus.” It was easier to think about than “baby” or “child.” Dutifully, Candy moved to the operating table.

Another nurse pulled up Candy’s gown and attached minute electrodes to her chest. A beeping noise began, but it took Candy a while to realize that the sound corresponded to the beating of her heart.

“I’m going to tilt the table,” said Dr. Burnham as Candy felt herself angle so that her feet were lower than her head. In that position she could feel the weight of her uterus in her pelvis. At the same time she felt a fluttering which she had noticed over the previous week and which she thought might be the fetus moving within her womb. Thankfully, it stopped quickly.

The next instant the door to the corridor burst open and Dr. Lawrence Foley backed in, holding up his dripping hands just like surgeons did in the movies. “Well,” he said in his peculiarly inflectionless voice, “how’s my girl?”

“I don’t feel the anesthetic,” said Candy anxiously. She was relieved to see Dr. Foley. He was a tall man with thin features and a long straight nose that sharply tented the front of his surgical mask. Soon all Candy could see of his face were his gray-green eyes. The rest was hidden, including his silver-white hair.

Candy had been seeing Dr. Foley on an infrequent basis for her routine gynecological care and had always liked and trusted the man. She had not had a checkup for eighteen months prior to her pregnancy, and when she had gone to his office a few weeks ago she had been surprised to see how much Dr. Foley had changed. She’d remembered him as being outgoing and not without a touch of dry humor. Candy wondered how much of his “new” personality was due to his disapproval of her unmarried pregnant state.

Dr. Foley looked at Dr. Burnham who cleared his throat: “I just gave her 8 milligrams of tetracaine. We’re using continuous epidural.” Stepping down to the end of the table, he lifted the blanket. Candy could see her feet, which appeared exceptionally pale in the bright fluorescent light from the X-ray view boxes. She could see Dr. Burnham touch her, but she felt nothing as he worked his way up her body until he was just under her breasts. Then she felt the prick of a needle and told him so. He smiled and said, “Perfect!”

For a moment Dr. Foley stood in the center of the room without moving. No one said anything; everyone just waited. Candy wondered what the man was thinking about, since he seemed to be looking directly at her. He’d done the same thing when she’d seen him in the clinic. Finally, he blinked and said, “You’ve got the best anesthesiologist in the house. I want you to relax now. We’ll be finished before you know it.”

Candy could hear some commotion behind her, then the snap of latex gloves as she watched Dr. Burnham fit a wire frame over her head. One of the nurses secured her left arm to her side with the sheet covering the OR table. Dr. Burnham taped her right arm securely to a board that stuck out from the table at right angles. That was the arm with the IV. Dr. Foley reappeared in Candy’s sight, gowned and gloved, and helped one of the nurses spread large drapes over her, effectively blocking nine-tenths of her view. Straight up she could see her IV bottles. Behind her, if she rolled her head back, she could see Dr. Burnham.

“Are we ready?” asked Dr. Foley.

“You’re on,” said Dr. Burnham. He looked down at Candy and winked. “You’re doing fine,” he reassured her. “You may feel a little pressure or some pulling, but you shouldn’t feel any pain.”

“Are you sure?” asked Candy.

“I’m sure.”

Candy could not see Dr. Foley, but she could hear him, especially when he said, “Scalpel.” She heard the sound of the scalpel slapping the rubber glove.

Closing her eyes, Candy waited for the pain. Thank God it didn’t come. All she could feel was the sensation of people leaning over her. For the first time she allowed herself the luxury of thinking that this whole nightmare might actually pass.

It had all started about nine months previously when she had decided to go off the pill. She’d been living with David Kirkpatrick for five years. He had believed she was as devoted to her dancing career as he was to his writing, but sometime after her thirty-fourth birthday she had begun nagging David to marry her and start a family. When he refused, she decided to try getting pregnant, certain he would change his mind. But he had remained adamant when she had told him of her condition. If she continued the pregnancy, he would leave. After ten days of weeping and countless scenes she had finally agreed to this abortion.

“Oh!” gasped Candy as she felt a stab of white-hot pain somewhere deep in her being. It was akin to the feeling when a dentist finds a sensitive spot in a tooth. Thankfully, the stab didn’t last long.

Dr. Burnham glanced up from his anesthesia chart, then stood to look over the ether screen at the operative site. “Are you guys pulling on the small bowel?”

“We just packed it away out of the operative field,” admitted Dr. Foley.

Dr. Burnham sat back down and gazed directly into Candy’s eyes. “You’re doing just great. It’s common for someone to feel pain when the small intestine is manipulated, but they’re not going to do that anymore. OK?”

“OK,” said Candy. It was a relief to be reassured that everything was going as it should. Yet she wasn’t surprised. Although Lawrence Foley’s manner seemed to lack the old warmth, she still had every confidence in him as a doctor. He’d been wonderful to her from the start: understanding and supportive, especially in helping her decide about the abortion. He’d spent several sessions just talking to her, calmly pointing out the difficulties of raising a child as a single parent and underlining the ease of having an abortion, though Candy was already in her sixteenth week.

There was no doubt in Candy’s mind that it had been Dr. Foley and the people at the Julian Clinic who had made it possible for her to go through with the abortion. The only thing that she had insisted upon was that she be sterilized. Dr. Foley had tried unsuccessfully to change her mind about the sterilization. She was thirty-six years old and she did not want to be tempted again to beat the biological clock by becoming pregnant, since it was obvious marriage was not in her immediate future.

“Kidney dish,” ordered Dr. Foley, bringing Candy’s attention back to the present. She heard the clank of metal against metal.

“Babcock clamp,” demanded Dr. Foley.

Candy rolled her eyes back and glanced up at Dr. Burnham. All she could see were his eyes. The rest of his face was hidden by his surgical mask. But she could tell he was smiling down at her. She let herself drift and the next thing she heard was Dr. Burnham saying, “It’s all over, Candy.”

With some difficulty she blinked and tried to make sense of the scene slowly coming into focus before her eyes. It was like an old-fashioned TV warming up: first there were sounds and voices, then slowly the picture and meaning emerged. The door to the corridor opened, and an orderly pulled an empty gurney into the room.

“Where’s Dr. Foley?” asked Candy.

“He’ll see you in the recovery room,” said Dr. Burnham. “Everything went perfectly.” He moved Candy’s IV bottle to the gurney.

Candy nodded as a tear ran down her cheek. Fortunately, before she could dwell on the fact that she would remain childless forever, one of the nurses took her hand and said, “Candy, we’re going to move you over onto the gurney now.”

In the adjoining auxiliary room, Dr. Foley directed his attention to the stainless-steel pan neatly covered by a white towel. To be certain that the specimen was unharmed, he lifted a corner of the towel. Satisfied, he picked up the pan, walked down the corridor, and descended the stairs to the pathology department.

Ignoring the residents and technicians, though several of them spoke to him by name, he walked through the main surgical area and entered a long corridor. At the end he stopped in front of an unmarked door. Balancing the specimen pan in one hand, he got out his keys and opened the door. The room beyond was a small and windowless laboratory. Dr. Foley moved slowly but deliberately as he stepped into the room, closed the door behind him, and put down the pan.

For a few moments he stood paralyzed until a sharp pain in his temples made him stagger backward. He bumped the countertop and steadied himself. Glancing at the large institutional clock on the wall, he was surprised to notice that the minute hand seemed to have jumped five minutes.

Swiftly and silently Dr. Foley performed several tasks. Then he stepped over to a large wooden crate in the center of the room and opened it. Within was a second, insulated container. Releasing the latch, Dr. Foley raised its lid and looked in. Resting on a bed of dry ice were a number of other specimens. Dr. Foley carefully placed the newest addition on the ice and closed the lid.

Twenty minutes later, an orderly dressed in a white shirt and blue pants pushed a dolly into the small unmarked laboratory and picked up the ice chest and packed it in a wooden crate. Using the freight elevator, he took it down to the loading dock and put it into a van.

Forty minutes after that, the wooden crate was taken off the van and placed in the luggage section of a Gulf Stream jet at Teterboro Airport in New Jersey.