Nearly a year had passed since her brainstorm—a mere blip in time in the institutional research world, but to Greta it felt like an eternity. Each day that passed had seemed to her to be a failure, a missed opportunity. So she worked, harder, faster, committed to bringing her cure to fruition.
News of her work had spread through the scientific and technological communities, and she’d been offered a plum speaking engagement at a joint conference put on by MIT and Harvard. That had resulted in an infusion of cash from the Alpha Fund.
And now her borderline harebrained notion was this close to reality. If the brain tissue samples showed that the supplement had even a small positive effect, then the next stage—the nano-robotics phase—would go into production just as soon as she had a healthy brain tissue slice to use as the standard. She was convinced—certain to her core—that if her nano-robots became a reality, the horrifying specter of cognitive degeneration would someday be nothing more than a historical footnote. She prayed she was right. Otherwise the Faustian bargain she’d struck with the Alpha Fund had been for nothing.
6
Sasha watched Dr. Kayser methodically cut his grilled salmon into bite-sized pieces and mix the fish into his large salad. Then he arranged the little ceramic bowl of dressing just so onto the side of his plate and looked up at her.
“Aren’t you hungry?” he asked, nodding his head toward her stew.
“Just waiting for it to cool down a bit.”
He smiled, blinked behind his glasses, and scanned the room.
The restaurant was nearly empty—the noon rush was long over, the lunchtime crowd back in their offices. The only other patrons were a cluster of business suits at the bar.
He took a bite of salad, chewed, swallowed, and dabbed at his mouth with the corner of his napkin. They’d exhausted the social topics—the twins, his health, the Steelers—it was time to get to the point of their meeting. But she’d learned long ago never to rush a witness. He’d start his story when he was ready. She eyed her bowl again, but it was still steaming. So she folded her hands in her lap and waited.
He repeated the bite, chew, swallow, dab routine and sipped his water. Then he rested his fork on the edge of his plate and leaned forward.
Here we go.
“It probably comes as no surprise to you that many of my patients—maybe most of them—end up losing their minds at the end of their lives. Dementia is terrifying to think about, but in some ways, if a person lives long enough, it becomes almost inevitable.”
Sasha’s mouth quirked into a little frown of disagreement, but she said nothing.
Across the table, Dr. Kayser must have noted her skepticism. He nodded. “Yes, your grandmother was the exception to that rule. She was one of the lucky ones. Her mind was as sharp the day she died as it was the day I met her. But you can’t count on being so lucky. So one thing I do at the very first patient visit is explain the process of cognitive deterioration. It’s important for people to understand the possibility that there will come a day when they’ll no longer be able to recognize their husbands and wives and children, drive a car, or balance a checkbook. They need to make their end of life decisions and plans while they still can. It’s not a pleasant topic, to be sure, but it’s a critical one.”
Sasha stared at the doctor’s ordinarily jovial face, now so somber. She didn’t envy him having those conversations. “Of course,” she said, prompting him to continue.
“I encourage all of my patients to consider enrolling in research studies to find causes and cures of early-onset dementia, Alzheimer’s disease, Parkinson’s disease, and other cognitive neuropathies—regardless of whether they’re exhibiting any signs of dementia or have family histories—”
“Hang on. Once a person’s showing signs of cognitive impairment, he or she doesn’t really have the capacity to enroll in a study. Right?”
He cut another piece of salmon into a small bite but left it on his plate. “You’re thinking of our friend, Mr. Craybill, aren’t you?”
“I am.” They’d worked together on behalf of a man who had been deemed incompetent by a local welfare agency. A finding of incapacitation meant he wasn’t competent to give consent.
“Well, as I understand it, there are different standards for consent under the law and under medical ethics. And it’s possible for a person to provide informed consent to medical research even if he’s already been diagnosed with diminished capacity. You’re right, though, that it’s much cleaner to enroll in a study when you have full possession of your faculties. In fact, that’s what your grandmother did.”
“She did?”
“Yes. She enrolled in a brain study where she spent 30 minutes a week doing puzzles and playing memory and spatial games online. She was in the control group.”
Sasha smiled. “I remember Nana’s games. She loved them. I didn’t realize they were part of a study; I thought she was just keeping her knives honed, as she liked to say.”
That elicited a small chuckle from the doctor. “Yes, it’s been shown that doing crossword puzzles and playing cognitive games does keep the brain healthy. Not everyone stays quite as sharp as she did, but, if nothing else, those activities will slow the decline. In any case, I make sure all my patients are aware of the various studies into the aging brain. I believe that’s one of my duties as someone who specializes in treating an aging population.”
“Sounds reasonable,” Sasha agreed.
He smiled again, a little sadly this time. “It does sound reasonable, doesn’t it? And I truly thought I was doing a service to my patients. Now, I’m not so sure.” His eyes dropped to the table.
“Why’s that?”
He looked up. “How much do you know about informed consent in the context of medical research?”
Sasha considered the question. “I’m not sure,” she admitted after a moment. “I have a pretty solid grasp of the concept of informed consent with regard to medical treatment. I know a physician is required to explain a procedure to a patient; give the patient complete information about the risks and benefits of a procedure, as well as the alternatives to the procedure; and ensure that the patient is in fact providing consent to the procedure before taking any action.”
The doctor nodded. “Yes, yes, that’s all right. Medical research is a little bit different, however, in that the requirement for obtaining consent is governed by federal regulation and compliance is tied to funding for the research. Screw up on the consent part, and a researcher risks losing federal dollars.”
“Serious stuff.” She picked up her spoon and tackled her autumn stew while he educated her on the finer points.
“Indeed. Typically, there will be an IRB, or institutional review board, overseeing the consent process and the entire study. It’s quite formal and structured.”
“That all sounds like a good thing,” Sasha remarked.
“I’ve always thought so, too, particularly because, thanks to my efforts, many of my patients are enrolled in various research studies. Most of them are run through the local universities and hospitals, but not all of them. But I’ve always had the peace of mind that the participants’ interests were being protected. Until now.”
“What’s changed?” Sasha probed, sneaking a discreet peek at her watch. She didn’t want to rush the doctor but at the same time she had a packed schedule and two babies who would be looking for their afternoon snack in about an hour.
“What’s changed is that I think one major local study is playing fast and loose with the rules,” he said in a slow, halting voice. “There’s a study led by a woman named Greta Allstrom—she’s very well-regarded, a real up and comer. She works closely with Golden Village’s dementia unit. Her research team goes over and performs regular blood draws on residents who previously consented to participate in her study, including many of my patients.”
He paused again, and Sasha told herself to be patient, wait him out.
He pushed the greens around on his plate for a moment. Then
he looked up and said, “I believe Dr. Allstrom’s gone too far. Not surprisingly, I’ve had a number of patients pass on while living at Golden Village. That is, after all, the point of such a facility. Since July, four of my patients who were enrolled in the study and residents in the dementia unit have died. As their treating physician, I was called in when they died.”
Sasha wasn’t quite following his train of thought, but her imagination was working overtime. “And you suspect foul play?”
“Oh, goodness, no. Nothing like that. But something untoward’s going on.” He removed his napkin from his lap, draped it over his half-eaten salad, then pushed the plate away. “I find it important to the family for me to stay involved in the process even after the death certificate has been signed. Often times, I’ve treated their loved one for years. My bearing witness to the end of life—attending the services, sharing stories—I think it helps give some closure.”
Sasha flashed back to the Irish wake her family had held for her Russian grandmother. Dr. Kayser had shown up and joined right in, telling uproarious stories that left her brothers laughing and even brought a smile to her mother’s lips.
“Of course.” She nodded and waited for him to continue.
“At first, I didn’t think anything of it. But these patients each had brain tissue removed during their autopsies.”
“That’s not standard?”
“Not really. Some people do donate their brains to science, but I asked some discreet questions of the next of kin. None of the four had done so. Their brain matter was harvested without consent.”
The statement hung in the air over the table for a long, silent moment.
“Are you sure?”
“I wasn’t but I am now. All four patients had enrolled in Dr. Allstrom’s study; as part of the research protocol, all four patients did have regular blood draws; but not one of them had consented to the study of their brain tissue postmortem.”
He looked at her expectantly, waiting for her to solve this problem or tell him what to do.
“Could a family member have consented just before or right after death?”
“That’s what I thought, too, until I started asking questions. That’s not what happened here. They’re taking brain tissue without permission. And I need you to help me stop them.”
7
Sasha burst through the front door and closed it quickly against the wind. As she hung her coat in the hall closet, she inhaled deeply. The smell of garlic bread baking and the spicy aroma of Connelly’s pasta sauce permeated the house, leading her to the warm, brightly lit kitchen.
Connelly was mixing a green salad and Finn and Fiona were side-by-side on their red, black, and white baby mats, staring up at the developmentally appropriate toys dangling overhead, reaching their little arms toward the mobiles and cooing. She wasn’t entirely convinced that babies could only see red, white, and black but she was pretty sure it was true of dogs. Mocha loved the mat and was forever trying to claim it as his napping spot. Even now, he was stretched out on the floor with his paws on the edge of the mat, waiting for his chance to weasel his way onto it.
Everyone except the dog turned at the sound of her heels clicking across the floor. She crouched to nuzzle the babies’ soft fuzzy heads in greeting. Connelly walked over and handed her a glass of wine. “Hi.” he said, giving her a quick kiss.
“Sorry I’m late.” She smiled sheepishly as she accepted the glass and leaned into him.
She was sorry. Her lunch with Dr. Kayser had run longer than she’d planned, and when she returned to the office she found herself distracted by his story. Her mind kept returning to his patients and their families and the abuse of trust they may have suffered. As a result, she hadn’t been particularly productive.
“Everything okay?” Connelly asked as if he had read her mind—or more likely her expression.
“Just a long day. I’ll hurry up and change and then feed the wonder twins before dinner.”
For their part, the babies had switched their attention from the mobiles to the conversation going on above their heads. Their eyes were volleying back and forth between Sasha and Connelly as if they were watching a tennis match.
“Sounds good,” he said. Then he turned to the twins. “Come on, team, tummy time while mummy changes,” he cooed as he flipped them onto their stomachs. They both eked out cranky howls of protest.
“You monster,” she teased over her shoulder. He gave her a crooked smile and turned back to his salad while she hurried upstairs, wineglass in hand, and traded her high heels, dress, and suit jacket for a pair of comfortable yoga pants and a soft, slouchy top.
By the time she said hello to the cat sleeping insolently on her cashmere sweater and padded back downstairs, Connelly had set the table. She eyed the twins and judged Finn to be the sleepier of the two. So she sat at the kitchen table and fed him first, while Connelly bustled around putting the finishing touches on his meal one-handed while Fiona clung to him like a small monkey. Finn’s eyelids drooped, then fluttered, then closed. She kissed him then traded him off to Connelly to transfer him to bed and took Fiona in her arms. Her daughter gazed up at her with an expression that seemed to indicate she thought her brother was a sucker for missing out on this grown-up time.
When Sasha had returned to work full-time a few weeks ago, the kids had naturally fallen into a routine that ensured everyone got plenty of one-on-one time (well, everyone except for her and Connelly). Finn, who was the night owl of the pair fell asleep before dinner and then was awake in the late evening. Fiona usually joined her parents at the table and then fell asleep shortly after, slumbering through Finn’s midnight escapades. The differences in her twins were almost as amazing as the similarities.
As she fed Fiona, she asked, “Can I do anything to help?”
“Sit. Eat,” he responded. He brought the salad bowl and warm bread to the table and sat across from her.
She smiled at him over Fiona’s head. “What did I do to deserve you?”
“I don’t know. But whatever your sin was, maybe you can make amends in your next life.” He winked.
She laughed at that, and so did Fiona as if she got the joke, too.
“How’d it go today? Did you get to talk to Dr. Kayser?” he asked as he passed her the salad bowl.
Sasha frowned. “I did. He’s concerned about some of his patients—for good reason.”
“What’s the issue?” Connelly asked.
“I’ll know more after I meet with some of his patients, but there’s a chance that some researchers may be taking advantage of dementia patients to avoid getting informed consent.”
“That sounds … ugly.”
“It feels ugly, too. Let’s talk about something else. Was your day interesting?”
A shadow crossed his face and he took a sip of wine before answering. “You could say that.”
Something in his tone sent a shiver of worry down her spine. She waited for him to continue.
“I had an unexpected visitor today.”
“Was it my mom again?” She tensed her shoulders. She thought she’d finally convinced Valentina that Connelly really was more than capable of taking care of the kids while she was at work.
“It wasn’t your mom. It was a messenger.”
“You mean, a delivery service or something?”
“No. Here. Don’t worry, this is a photocopy. I’m going to give Hank the original and ask him to check it for prints.” Connelly reached into his pocket and removed a square of paper. He passed it across the table to her.
She carefully unfolded the sheet of paper and stared down at the printing. “Who’s Doug Wynn?”
“I don’t know, but he claims to have information about my father.” His face was drawn, his expression unreadable.
“Your father? Are you sure?”
He shook his head. “I’m not. I haven’t had a chance to look into this guy’s background yet. The kids woke up just after his messenger left, and they kept me hopping.
I’m going to talk to Hank tomorrow and have him run this guy through the databases. I mean, this could be a shakedown.”
“It could be,” she said slowly, “but you haven’t been really public about the fact the you’re looking for him. I mean, there’s no reward or anything for information.”
“True. But maybe someone hacked the files at the DNA registry and is trying to prey on orphans desperate to make a connection.”
“Maybe. Or it could be legit.” He shrugged but made the concession in a tone that suggested it pained him to do so.
Then her imagination ran ahead of her and she tightened her grip on the baby reflexively. “Or it could be an ambush. I guess we’ve made enough enemies that it would pay to be careful.”
“Agreed. Like I said, I’ll talk to Hank in the morning.”
She studied her husband’s grim face for a long moment. “You know, you can allow yourself to feel a little bit of excitement. This Doug Wynn guy might turn out to be a dead end, but he also might have a solid lead. Imagine if this guy actually does know where your dad is?”
He took his time answering. “Let’s not get ahead of ourselves.”
“You’re right.” She knew him well enough to know he’d need time to get used to the idea that this might be the way to learn about his past. There was no point in pushing the issue.
He looked as if he were about to say something more, but before he had the chance, Fiona pitched forward and her little fists went straight down in the middle of Sasha’s plate of lasagna. Pasta sauce splashed in the air and rained down over the three of them and all over the table.
8
Leo looked around Hank Richards’ makeshift office. As befit the director of a secretive, shadow agency, Hank had no permanent office. The government rented space for him on an as-needed basis through a series of boring-sounding covers. For instance, anyone sufficiently curious about who was leasing the six hundred square feet on the ground floor of the Grant Street building to do any research into the matter would learn that the lessee was the dry-sounding Assistant Secretary for Administration and Management for the Department of Labor. At that point, Leo was sure, the intrepid researcher would move on to a more interesting pastime—say, watching paint dry or clipping his or her toenails.
Informed Consent Page 3
