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Authors: Melissa F. Miller

BOOK: Informed Consent
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12

S
asha was typing
up the notes she’d taken at Golden Village when she felt someone watching her. Naya stood in the doorway to her office balancing a stack of files in her arms. She wore an expression that said she was trying to figure out how to broach a touchy subject.

“What?”

“What what?” Naya responded.

“Come on, I know that look. What’s on your mind?”

Sasha had an inkling that Naya might suggest it was time to hire an actual legal assistant instead of piling that work on top of her own associate workload. And Sasha tended to agree. But what Naya actually said was completely unexpected.

She cleared her throat. “I don’t know Mac, just thinking about what Dr. Allstrom said. She has a point.”

Sasha searched her memory. It was entirely possible that the self-righteous geneticist had a point. But if she’d made one, it had been obscured by her didactic delivery. “About—?” she finally prompted Naya.

“About the need to get a dementia drug to market as quickly as possible. You don’t understand what something like that could mean to people.” Her voice quavered.

Naya’s mom. Of course.

It hadn’t even dawned on her that visiting Golden Village would exact an emotional toll on Naya. “Naya, I’m so sorry. I didn’t think. That had to have been hard to sit through.” Sasha’s cheeks burned with shame. Some friend she was. Naya had watched her mother deteriorate slowly over several years, her mind ravaged by Alzheimer’s, caring for her around the clock until her death a few years back.

“Don’t be sorry. You were doing your job, and so was I.” Naya’s eyes flashed a warning—sympathy wasn’t what she was looking for.

Sasha closed her notebook and walked around the desk to join Naya at the door.

“Right, we were doing our jobs. But that doesn’t mean we don’t have feelings.” She placed a light hand on Naya’s shoulder, half expecting her to brush it off.

But she didn’t. Instead, she took a long, shaky breath. “This isn’t about my feelings. My mama’s gone. But there are other families out there—families who would give anything to get their parents back.”

“No doubt. But there are also families out there who feel betrayed that their parents’ final wishes weren’t considered or, worse, were disregarded. No one’s saying Dr. Allstrom’s research isn’t important or necessary, because it is. She just needs to follow the rules.” Sasha was careful to keep her voice even and devoid of emotion.

All the same, Caroline slowed her pace as she passed by on her way to the supply closet, as if she could tell trouble was brewing.

“The rules? You mean the rule that she has to ask dead people to consent to her using their tissue and blood samples? That’s not even required by the letter of the law.” Naya’s narrow shoulders shook and her chin jutted forward.

Sasha took her time forming an answer. While she was still thinking, Caroline returned with her box of pens and paused behind Naya.

“This sounds like that Henrietta Lacks situation,” the secretary remarked.

Naya and Sasha turned and looked at her.

“Who?” Sasha asked.

“Henrietta Lacks. She died of ovarian cancer years ago, but researchers used her cells to create the HeLa cell line without letting the family know. It really affected her children to know that pieces of her were just out there … floating around. Some journalist wrote a bestseller about it.” Caroline gave her head a small, sad shake. “My book club read it last month.”

“I remember hearing about that,” Naya said slowly. She chewed on her lower lip. “I understand what you two are saying, but this research Dr. Allstrom’s doing could change people’s lives.”

“It’s a slippery slope, though. The law requires informed consent for good reasons. You may be right that Dr. Allstrom’s actions comply with the letter of the law, but they definitely violate the spirit of the law.” Sasha paused and considered what she was about to say. “All that being said, if you feel like you can’t work on this case, I’ll understand.”

Naya stiffened, and Caroline hurried away, out of the danger zone.

“I didn’t ask to get off the case.” Her tone was measured but her jaw was clenched.

“I know you didn’t. I’m offering.”

She shook her head. “I’m going to do my job to the best of my ability, but that doesn’t mean I have to like it.” She locked eyes with Sasha. “I think a lot of people could end up suffering needlessly if Allstrom’s work gets bogged down in red tape because of us.”

Naya turned and walked away.

She’d said ‘because of us,’ but Sasha knew what she’d really meant was ‘because of
you
.’

S
asha eyed
her husband over the top of her wineglass. Something was going on with him. He’d been jittering his right leg under the table since they’d sat down for dinner. And now he was squaring his utensils and plate so as to ensure his place setting was perfectly aligned. The last time she’d seen him this agitated was the night they’d met. That evening, she’d chalked his nerves up to the fact that they’d just found a dead body in a Dumpster, but he later told her it was because he thought she was cute. Leave it to Connelly to be unfazed by a corpse but rattled by a girl.

She turned her attention to her mother, who seemed to be oblivious to her son-in-law’s nervousness. Whatever was on Connelly’s mind, it was probably best left unsaid until her mom left.

“Thanks for watching Finn and Fiona today,” she said.

Valentina waved a hand and glanced at the twins, who were sound asleep on their blanket on the floor. “They were dolls. It was easy—and fun.”

Sasha gave her a knowing look. Taking care of twin two-month olds was sometimes fun, but it was never
easy.
“It looks like you wore them out.”

Her mother covered a small yawn with her perfectly manicured hand. “They wore me out, too. In fact, I hate to eat and run, but I really should get going. Dad texted me that he was leaving Sean’s a half an hour ago. If I leave him home alone too long, he’ll eat his way through a container of ice cream.”

She stood and pushed in her chair then folded her napkin into a tidy square and placed it on the table. “Thanks for the delicious meal, Leo.”

He came around the table to hug her. “You’re sure you can’t stay for coffee and cookies? Your daughter’ll make me eat fruit for dessert if you go. Stay. You’d be doing me a favor.”

Valentina giggled and patted his arm. “Fruit’s better for you anyway.”

Sasha retrieved her mother’s coat from the hall closet and met her at the door with it. “Have a good night, Mom,” she said as she helped her into her coat.

Her mom leaned in and presented her cheek for a kiss. “You, too, sweetheart.”

Sasha wrapped her sweater around her body, hugging it tight against the chill and watched from the porch as her mother got into her car. She waited until Valentina had pulled out and rounded the corner before going back into the warm house.

Connelly was in the kitchen, loading the dishwasher.

“I’ll finish that,” she said.

As she approached the counter, he blocked her with a playful hip check. “I’m done now.” He added a dishwasher pod and started the machine.

“Just like a blister. I show up when the work’s done,” she smirked.

He shook his head and topped off her wine. “Here, finish off this bottle. Unless you want to join me for a scotch.”

Uh-oh. Scotch. Either they were celebrating something or whatever he was nervous about was really bad.

“Wine’s fine for me.”

While he poured his drink, she checked on the babies; they were still sleeping. Finn had rolled to his side and thrown an arm around his sister. Her heart squeezed at the sight.

She joined Connelly in front of the fire and leaned in close. “So, what did you have to tell me?”

“Tell you?” he echoed.

She cocked her head. “Come on, Connelly. You don’t think I can tell that there’s something on your mind? You did everything but pull out a ruler to line up your silverware at dinner.”

He chuckled and shook his glass gently, swirling the liquid inside around the lone ice cube. “Hank got back to me about my dad. Well, about Doug Wynn.”

“And?”

“As far as he can tell, Wynn is clean.”

“That reminds me,” she said, “Naya wasn’t able to find out anything about Mr. Wynn, but she did manage to figure out how
he
found
you
.”

He looked up from the glass with an expression of mild surprise. “She did? How’d he track me down?”

“My mother.”

“Pardon?”

She took a sip of wine. “Apparently, my mom announced the twin’s arrival to her church. I think she sponsored altar flowers in their honor, if I remember correctly. Anyway, the church newsletter—which is available as a public PDF on the website archives—lists our address in case anyone wanted to send a gift or card or drop by with a dish.”

He nodded slowly, and she knew he was remembering the outpouring of dinners, tiny, adorable outfits, and soft, handmade blankets from the parishioners of St. Mark’s. “Honest mistake. But even if the bulletin or whatever it was listed our names, how’d this guy know that Leo Connelly is me? I mean, that I’m the kid of this guy he might know?” He shook his head at himself. “Do you follow?”

“How’d he know you’re looking for your dad?”

“Right?”

“I’m not sure he did,” she said, rocking back in the Amish-made rocker her parents had given her as a baby gift. “I think, assuming he does know your father, he would know your mom’s name. And she had no reason to hide her whereabouts. Naya tells me it’s pretty easy to find information about her online—including the fact that she had one son, Leonard.”

He was staring into his glass again.

“Connelly?” she prompted when he didn’t respond.

“Sorry. Yeah, that follows. I know she said she tried to get the news that she was pregnant back to my dad. When I was sixteen, she gave me his first name and the name of the village where he lived. That’s all she had. I guess it’s conceivable that he did learn about my conception.” He gave a little laugh at his own play on words. “But why reach out to me now?”

She didn’t have an answer for that. “I don’t know. Why not now? What is his name, anyway?”

“Duc.”

“Duc,” she repeated. She rocked forward and stood. Then she walked over to Connelly’s chair and perched on the arm. She rubbed his shoulders and then rested her hand on his forearm. “Are you going to go meet Wynn?”

He hesitated. “Yes.”

“I’m coming with you.”

“No.”

“Yes, I am.”

He grabbed her hand between his and stared hard at her face. “That’s crazy. We don’t know anything, really, about this guy or what he wants. And, what exactly do you intend to do with the twins?”

“Bring them.”

“What? No. No, no, no.”

“Yes.”

“Sasha—”

She cut him off. “Listen. If you think I’m letting you do this alone, you’re the crazy one. This guy could have good news about you father. Or he could have bad news. Or it could be a scam. Either way, though, we’re in this together—for better or worse. I’m going to be there for you.”

“You can’t drag the babies to coastal Maine in late October—it might as well be the dead of winter up there.”

“I’m fairly certain even coastal Maine has hotels—they’re probably even heated.”

“Great Cranberry Island? That sounds like a hopping tourist destination to you?”

She waved off the question. “I don’t know. If there’s no hotel, I’m sure we can rent a house from a private owner. Don’t get mired in the details. Caroline can make the arrangements tomorrow. Hank will be happy to watch Mocha, and Naya can come over to feed Java while we’re gone.” She bounced a bit on the arm of the chair, buzzing with excitement at the prospect of a trip.

“I really don’t think this is a good idea,” he continued.

“Look. I’ve been more or less cocooning with Finn and Fiona for months. Don’t get me wrong, it’s cozy. But, I think a little getaway is exactly what I need. What
we
need. There’s been a dearth of adventure in our lives.”

He dragged his fingers through his thick, dark hair then gulped his drink. “No adventure,” he said firmly.

“Fine. Activity. There’s been a dearth of activity. I solemnly swear that while you’re meeting with Wynn, the babies and I will be engaged in safe, non-adventurous tourist activities.”

The faintest hint of a smile developed on his lips. “Such as?”

She thought for a moment, trying to come up with suitably staid-sounding options. “Such as browsing antique stores and touring museums. Maybe we’ll go wild and check out a story time at a library or bookstore.” She fixed him with her most dazzling smile and blinked innocently.

An actual laugh escaped from his throat. “It’s pointless to fight you on this.”

“It’s pointless to fight me period, end of sentence,” she corrected him.

He nodded wryly and then leaned in to cover her mouth with a kiss. “Amen to that.”

Fiona whimpered in her sleep. Sasha rested her wineglass on the side table.

“I’m so glad you’ve seen the light.” She rested her hands on his warm chest for a moment. “I’m going to take Fiona up to bed to feed and change her. Bring Finn up after you finish your drink?”

“Okay.”

“I love you.”

“I love you more,” he responded.

She bent and gently moved Finn’s arm then scooped up Fiona and headed for the staircase. As she mounted the first step, she thought she heard Connelly mutter something about, “Not what Hank meant when he said bring your friend.”

She paused and turned. “I didn’t catch that,” she stage whispered, cradling Fiona against her chest.

“Nothing important. I’ll be up in a few.”

She held his gaze for a moment, but he didn’t say anything further, so she continued up the stairs.

13

G
reta squinted
at the test results on the monitor, searching for a pattern in the noise. The soft rap on her office door barely registered. After a moment’s delay, she swiveled her chair toward the entrance and called, “Come in.”

The door opened. Mikki Yotamora craned her neck and stuck her head into the opening and said apologetically, “Sorry to disturb you, Dr. Allstrom. Director Buxton called the lab and asked to speak to you and, well, none of us knew how to transfer the call.” The graduate student gave a sheepish laugh.

Greta tried to hide her surprise at the news that the director of the Institutional Review Board was looking for her and searched her memory for the instructions for transferring a telephone call. “Thanks for coming to find me, Mikki. Place the caller on hold, hit star 7, dial my extension, hit the TRF button, wait for the tone, then hit the hold button again.” As she recited the directions, she scribbled them on a post-it note. She handed it to the researcher. “Here, you might want to post this by the phone.”

Mikki bobbed her head in thanks and snaked her arm into the small space to take the slip of paper. “Thanks, Dr. Allstrom.” She pulled the door shut, and Greta could hear her quick footsteps as she hurried down the hallway back to the lab.

Greta used the delay to save her work and close the window on her computer so she wouldn’t be distracted during the call. There could really be only one reason Virgil Buxton would be calling her: Golden Village and the visit from the blasted lawyers. She should have known it would get back to him. She closed her eyes and took a centering breath. Last semester, the university had sponsored a mindfulness seminar for the faculty. Although she’d pooh-poohed the notion at the time, she figured it couldn’t hurt now. Any port in a storm and all.

The phone came to life on her desk. She opened her eyes and lifted the receiver. “Virgil?”

“Dr. Allstrom,” he responded, all business, “I understand from your student that you’re in the middle of something. I apologize for the interruption, but this is important.”

“Of course.” She was thrown slightly off-balance by his formal tone. Although Virgil Buxton wielded enormous power, he usually projected an affable, friendly persona. This bureaucratic version of Virgil did nothing to assuage her worry.

“I received a call from Athena Ray this morning.”

She groaned inwardly. She’d thought she’d managed to smooth things over with Athena before she’d left Golden Village yesterday afternoon. Apparently, she’d thought wrong.

Virgil seemed to be waiting for her to say something. “Is this about Dr. Kayser’s issue with my informed consent procedures?” she asked, knowing full well that it was. “I explained to his attorneys yesterday that—”

“What on earth did you think you were doing? Why would you meet with attorneys without someone from the legal department present, Greta?”

She winced at the stern tone and sigh of disappointment but allowed herself to feel a smidgeon of relief at the fact that at least he’d used her first name. “Virgil, it wasn’t a planned meeting. I was checking on our subjects when Athena called and asked me to come by her office. I didn’t even know the lawyers were there,” she protested.

“All the same, this is a problem. You should have referred them to the university counsel’s office.”

“You’re right. I’m sorry,” she answered meekly. In point of fact, she wasn’t sorry, not in the least. Trying to handle the situation herself was the right call. It was the most efficient, least disruptive option. Having a team of in-house lawyers crawling all over her lab and her records would waste time, prove distracting, and possibly set her behind in her timetable. It had
definitely
been worth trying to resolve the situation on her own. The memory of the Alpha Fund’s stance on delays made her shiver. But now a setback seemed inevitable, unavoidable.

Virgil’s tone softened slightly. “Apology accepted. I’m sure you were only trying to protect your project.”

Or maybe not so unavoidable. Maybe she could convince Virgil to keep the legal folks at bay. “I was,” she hurriedly assured him. “You may not know this, but we’re at a truly critical juncture in the research. Any distraction from our work would be a huge detriment right now. I still should have followed protocol, of course, but I really didn’t see the harm in explaining to the attorneys that Dr. Kayser’s concerns are misplaced.”

“Are they?”

“Are they misplaced?” she asked, seeking clarification.

“Yes.”

“Of course they are. You reviewed my informed consent forms yourself. They comply with the DHHS regulations. To the letter.”

“I pulled out my notes this morning after the call from Mrs. Ray. I stand behind the forms as far as they go, but according to the lawyers, your current research exceeds the scope of the consent. Is that true?”

She pinched the phone between her ear and shoulder and scrubbed her face with her hands before answering. “I would say no.”

He sighed. “Go on.”

“Dr. Kayser’s patients—all of the study participants—were advised of the purpose of the study and what we’d be doing with their blood samples. They signed forms consenting to provide regular blood draws.” She paused and searched the tile drop ceiling for inspiration as she considered how to phrase this next part. “Hypothetically, we either could have conducted a re-interview and gotten a new consent form or, at the outset, could have obtained a blanket consent to additional research. But neither option was practical in this case.”

“Why not?”

“Well, at the outset, the study design didn’t call for further research beyond the blood samples, so we didn’t include a blanket waiver. Our results were more promising than even we’d expected, so the study evolved. It happens.”

“It does. It happens all the time. And new informed consent to participate in the new research is generally preferable to a blanket consent, so I likely wouldn’t have approved your original form had it contained a blanket consent. Which leaves the question—why didn’t you go back to the participants and get new consents?”

“Two reasons. First, the participants are in varying stages of dementia, Virgil. Any consent they could have given would have been open to attack as not being truly informed.”

He
hmmed
his agreement to that.

Heartened, she continued, “And second, the additional research requires the harvesting of brain tissue. That obviously occurs post-mortem. And, unless I’m mistaken, a non-living research subject is exempt from the informed consent requirements.”

“Ahhhh.” Virgil drew out the sound, and she could imagine the lightbulb click on over his head as understanding dawned.

She waited a moment for him to fully consider the situation then said, “So, we’re good. Right?”

He waffled. “Technically, your program may be compliant.” He hesitated and then said, “But it’s a little too cute.”

“Too cute?”

“Please understand, I don’t believe you’ve done anything untoward—”

“Good. Because I haven’t.”

“However, surely you can understand that it looks a bit off. You enroll competent seniors into a study to draw their blood, wait until they’re in full-blown dementia, add them to your brain tissue study, and then wait for them to die.”

“That is assuredly
not
what I do,” she protested.

“That’s how it looks, Greta.”

Her frustration level was rising, threatening to overflow and undo all the gains she’d just made with Virgil. She couldn’t afford to let that happen—he was her lifeline to funding for the drug trials. Completion of the drug trials was her lifeline to the Alpha Fund’s nano-robotics investment. And failure was out of the question. She forced herself to take a long, slow breath before she responded.

“I’m sorry to hear that it looks that way. I don’t want to upset any patient families or clinicians—that’s the last thing I want. But changing the project design now would be disastrous. All the work to this point would be for nothing. What can I do to ease your mind
and
keep the study on track?”

It was Virgil’s turn to take a deep breath. She listened to his loud exhale and prayed he’d tell her to just stay the course.

He didn’t.

“It’s not my mind you need to ease, Greta. If I were you, I’d reach out to Dr. Kayser—not through his lawyers, mind you. Contact him directly and walk him through what you’ve just told me. You need to get him on board.”

The ominous note in his voice wasn’t lost on her. “Or else?”

“Or else, I’m afraid, I’ll have to freeze your funding until you re-interview all of the patients and obtain new, expanded consent. I’m sorry, Greta.”

“So am I.” Sorry didn’t begin to cover it. She was terrified.

“Don’t concede defeat just yet. See if you can’t persuade Dr. Kayser. You can be very convincing, you know.”

A sliver of hope pushed through her dismay.
Convince Dr. Kayser.

“Thanks. Virgil. I appreciate your candor. Now, if you’ll forgive me, I really do need to get back to my work.”

“Of course, of course.”

She ended the call and stared blankly at the whiteboard that hung over her desk, not seeing her scribbled formulae, scrawled reminders, and notes about appointments.

Convince Kayser—one way or another.

D
oug reclined
against the stack of pillows piled high in front of his headboard, which he’d carefully arranged just so to prop him up to a half-seated position, and sipped his lukewarm broth. After a moment, he noticed that the answering machine light was blinking. A red numeral 2 flashed on the display to let him know his answering machine had recorded two messages while he’d slept. He leaned over and pressed the play button.

“Mr. Wynn, this is Marie from Coastal Oncology Specialists, calling to remind you that you have an appointment tomorrow, October 20th, at eleven o’clock. If you can’t keep this appointment, please call the office to reschedule.”

Could it really already be October 19th? He pushed himself up onto his elbows and squinted at the date on his wristwatch. Yes, it really was. Just three more days and he would know if his son would stand by him. Three more days. He sunk back against the pillows.

“Doug? It’s Stevey. My errand boy seems to have gone missing. I don’t suppose you know where I might find him, eh?”
Stevey’s voice was wry and knowing. Doug shook his head. Apparently Stevey would never learn. If he knew—or even suspected—that his messenger was in a shallow grave, why on earth hint at it aloud, let alone on a recorded message that could theoretically be discoverable evidence some day.

Stevey’s message continued:

“Oh. A friend of mine who works for the airlines gave me a head’s up. Leonard Connelly booked a ticket on a flight to Portland. Actually, he booked two tickets. Anyway, it looks like he’s headed your way. I hope it works out for you, old friend.”

Doug’s emotions cycled through excitement that his son was coming; irritation that Stevey had overstepped—he hadn’t asked the man to monitor flights; anxiety about the fact that his son was apparently not coming alone; and, strangest of all, comfort from the genuine concern he detected in Stevey’s voice. The news that Leonard was bringing someone with him resonated most strongly. Doug knew that his son had, at one time, been employed by the U.S. Marshal’s Service. Although records showed him to be retired, Doug believed the maxim ‘once law enforcement, always law enforcement.’ A cold finger of uneasiness trailed along his lungs.

He considered calling Stevey to get more details about his son’s traveling companion but decided against it. He didn’t want to involve Stevey any more than necessary in his personal business. If the meeting with his son went poorly, the less Stevey knew, the better. No, the prudent course would be to prepare for his visit as completely as he could in the next three days. Two days, he corrected himself. Tomorrow would be taken up entirely by the long trip to the oncologist’s office.

He gulped down the remainder of his soup, grimacing at the taste of the now-cold liquid. But he needed nourishment to keep his strength up. There was much to do before Leonard arrived. Much to do.

He swung his legs over the edge of the bed and pushed himself to standing. He was tough, he reminded himself. And unafraid—he added mentally—rolling up the sleeve of his pajama top and gazing for a moment at his faded tattoo.

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