Keywords

Public Health Ethics Issue

Public health practitioners often encounter situations where individuals’ rights and population health are in conflict. This happens more frequently in countries like the United States where greater value is placed on the principle of individual liberty. Public health practice respectspersonal autonomy, human rights and civil liberties, extending respect even to people who refuse medical treatment; but one relevant harm that public health is both obligated and authorized to address is the spread of communicable diseases. In other words, one’s libertyrights become subject to limitation, when the exercise of that liberty threatens the health of others (Gostin and Wiley 2016, xvii). Limiting the spread of communicable disease may require coercive legal measures that impact an individual’s behavior and, in some circumstances, can be ethically justified. Yet the exercise of authority alone, even when legal, is not always the best option. Exercising authority can provoke resistance, and it often fails to sustain improved health status. Public health policies, practices, and actions often are more efficacious when practitioners have gained the public’s trust and compliance is voluntary. Cooperation, at the individual and at the community levels, is as necessary as authority (American Public Health Association2019).

When the intimate act of sexual intercourse leads to the transmission of a sexually transmitted disease (STD), it can become a public health matter. Partner notification (PN) is a core public health intervention for the prevention and control of sexually transmitted diseases (Desir, Ladd and Gaydos 2016). The intervention entails contacting any person potentially exposed to an infection to notify them that they may be at risk for disease and may need treatment (Barrow et al. 2020, 9–10). Legal authority for PN rests with the states, and the service can vary among states and local jurisdictions, but adherence to basic PN program principles is common. While patient-referral is encouraged, most jurisdictions across the United States implement PN mainly by provider-referral, or more specifically health departmentreferral, which involves public health workers called Disease Intervention Specialists (DIS) (Hogben 2007). Sometimes without much, if any, warning a DIS may show up at a person’s residence, place of employment, or even in a street encounter to inform the person that they may have been infected with a disease that is generally considered stigmatizing (Rusch et al. 2008).

According to Centers for Disease Control and Prevention (CDC) recommendations, participation in PN should be voluntary and not coerced (CDC2008). Individuals retain the right to refuse PN services. To be effective, health departments should ensure that the index patient and the partner voluntarily choose to: (1) provide information about themselves and others in response to questions and requests from a DIS; (2) notify others of their possible exposure to an STD; (3) accept STD testing and treatment; and (4) engage in behaviors that promote health and reduce risk for transmission or acquisition of STDs (CDC2008). However, in some instances voluntary participation in the intervention may not be achieved. An STD index patient may be unable to or unwilling to identify his/her sex partners. Other times, the named partner may choose to decline the notification intervention (Magaziner et al. 2018).

Despite studies that suggest that provider-referral, if used, can increase the likelihood that named partners will receive treatment (Fleming and Hogben 2017), historic patterns of injustice and indifference can leave many individuals, particularly those from disadvantaged communities, suspicious of a public health worker’s concern for their welfare (Armstrong et al. 2013). Furthermore, a given partner’s misgivings about PN may be exacerbated by the fact that the DIS is obligated to protect the index patient’s identity and therefore cannot disclose this information to the partner (Hunter et al. 2014).

In the case of PN for STD intervention this reasonable distrust needs to be recognized, understood, and worked through, the urgency of disease transmission notwithstanding (Sankar et al. 2003) Applying an ethical framework to the PN intervention can support the process of building a relationship between the DIS and the client leading to more effective disease intervention and prevention, promoting public health, and improving trust between local health departments and the communities they serve (Cunningham et al. 2009).

Moreover, health care providers outside of the traditional public STD clinic settings increasingly are addressing sexual health care service needs. Several studies, for example, report that primary care clinics may be diagnosing up to half of reported STDs, and in 2018, 71–80% of STD cases were reported from non-STD clinics (Barrow et al. 2020, 1–2). Public health providers, i.e., health departments, will likely be more effective in their STD prevention and control efforts if they are able to establish partnerships not only with other health and social service providers but also with the communities they seek to serve (Valentine 2018).

Background Information

In the United States there are four nationally notifiable STDs: chlamydia, gonorrhea, syphilis, and chancroid. Health providers and laboratories are required by statutes and regulations to report cases or positive lab results of these conditions to state and local STD programs, who in turn provide agreed upon data without personal identifying information to CDC where national summaries are generated. The combined cases of syphilis, gonorrhea, and chlamydia reached an all-time high in the United States in 2018 (CDC2019). In addition to individual-level risk behaviors (e.g., multiple sex partners, lack of condom use), research shows that social determinants of health also predispose populations to health threats such as sexually transmitted infections (Avey et al. 2013). To be effective, public health interventions must account for, and where applicable, address these determinants. These determinants can include income, housing, education, discrimination, and access to health care. Even transportation, or the lack thereof, can act as a determinant of health in disadvantaged communities since STD clinics can be inconveniently located from neighborhoods experiencing higher burdens of STDs, and in many situations, public transportation may not be available (Syed, Gerber, and Sharp 2013).

According to CDC’s Division of STDPrevention in their 2018 Sexually Transmitted DiseaseSurveillance Report, from 2017 to 2018, cases of gonorrhea in the United States increased to more than 580,000, the highest number reported since 1991; and cases of chlamydia increased to more than 1.7 million, the most ever reported to CDC(CDC2019 3–23). There were also more than 115,000syphiliscases in 2018. The number of primary and secondarysyphiliscases, the most infectious stages ofsyphilis, increased 14% to more than 35,000 cases, which is the highest number reported since 1991 (CDC2019, 24–31).

Syphilis, caused by the bacterium Treponema pallidum, is sexually transmitted from person to person by direct contact with infectious lesions such as a syphilitic sore, known as a chancre. The exception is pregnant women with syphilis, who can transmit the infection to their unborn child directly via the bloodstream. In the United States, as in most higher-income countries, syphilis occurs disproportionately among marginalized populations, among people who are poor with inadequate access to health care (Hook 2017). Transmission of syphilis within a sexual partnership depends on many factors, including the frequency of sex, type of sexual contact (i.e. penile-vaginal, penile-anal or penile-oral), the stage of infection in the source patient, and the susceptibility of the partner (Stoltey and Cohen 2015) Transmission of syphilis can occur during vaginal, anal, or oral sex.

The rising rate of infectious syphilis with its disturbing implications for infant mortality is a special concern. Increases in infectioussyphilisamong women of reproductive age leads to increases incongenital syphilis, a disease that occurs when a motherwithsyphilispasses the infection on to her baby during pregnancy. Between 2014 and 2018, the syphilis rate among U.S. women increased 172.7%. More notably during this same period, the rate of infectious syphilis among reproductive-aged women (aged 15–44 years) increased 165.4%. Consequently, among newborns,syphiliscases increased 40% between 2014 and 2018 to more than 1300 cases (CDC2019, 24–31).

Congenital syphilis, the consequence of untreated syphilis in pregnant women, kills babies (Peeling et al. 2017). In some cases, death occurs during the pregnancy, in other cases, soon after birth. If an infected infant survives the disease, the infant can have both physical and mental developmental disabilities. In 2018 there were 78 syphilitic stillbirths and 16 infant deaths. (CDC2019, 29–30). This is an especially tragic statistic, since most cases of congenital syphilis are preventable if women are screened for syphilis and treated early during prenatal care (Rubin 2019). Screening for syphilis at the first prenatal visit to prevent congenital syphilis is standard of care and legally mandated in most U.S. jurisdictions (Warren et al. 2018), although that assumes there is a prenatal visit and many disadvantaged women lack access to prenatal care. It is not unusual for pregnant women to be treated prophylactically, even at the risk of overtreatment, to protect the baby (Lago 2016).

Approach to the Narrative

Published in 2015, federal treatment guidelines include specific recommendations for screening and treatment of pregnant women to prevent congenital syphilis (Workowski and Bolan 2015, 69–78). However, in a world where the women at risk of transmitting syphilis to their babies are also often at risk for numerous negative determinants, what should be routine can become complicated. Nevertheless, for STD programs, getting pregnant women in for testing and treatment is a priority, particularly in the case of syphilis (Kimball et al. 2020). The narrative that follows, based on an actual PN case, describes the complex challenges one local STD clinic DIS and clinic director encountered when seeking to prevent a congenital syphilis case. Linda, an experienced DIS, learns from her syphilis index patient, Tony, that one of his sex partners, Jeanie, might be pregnant. Going with what little information Tony is able to provide, Linda launches an urgent search for Jeanie and finds her. Jeanie, however, refuses treatment.

Narrative

For Linda when it came to syphilis it was all about the babies. Fortunately, Tony was able to give Linda Jeanie’s last name and the neighborhood where Jeanie usually hung-out. Unfortunately, Tony did not have an address for Jeanie. This meant Linda was probably going to have to approach Jeanie in a public setting, on the street. Linda hated when that happened.

Before heading out to look for Jeanie, Linda huddled with Charles, her DIS supervisor, in his cramped cubicle that served as an office, to go over the details about the case.

“I asked him if he paid her for sex but he said no,” Linda reported as Charles jotted down notes. “He just helped her buy some groceries,” Linda continued. “So, I said ‘You’re friends then?’ and he said not really. But he sure wanted me to know it’s not his baby.” Linda said. “He just helps her get by.”

“But he seems to know her pretty well,” Charles observed. “You think he’ll talk to her?”

Linda shook her head doubtfully.

“Probably not. I wouldn’t chance it. Not with her being pregnant. At least I got a good description. I know who I’m looking for.”

It took her a couple of trips to the neighborhood Tony had directed her to, but Linda eventually found Jeanie, coming out of a convenience store. “Oh my God,” Linda whispered to herself that day, as she sized-up Jeanie’s skinny frame with its protruding belly. “She is pregnant!” How far along was she, Linda worried. Was the baby okay?

Frantically Linda parked her car in a no-parking zone, tossed her governmentOfficial Business sign onto the dashboard, jumped out of her car. Jeanie, unaware that she was being followed, ambled along, sipping from a can of soda. When she stopped at the intersection to cross the street, Linda was able to catch up with Jeanie.

“Excuse me,” Linda started. “Jeanie?”

Bristling immediately Jeanie examined Linda with a mixture of alarm and suspicion.

“How do you know me?” she demanded.

“I’m from the health department,” Linda launched into her introductions and health appeal, flashing her health department badge.

“So, what do you want with me?”

“You see,” Linda carefully began her explanation, “Someone you recently had sex with and who cares about your health--.”

“Get lost!” Jeanie cut her off and stalked off into the street.

“Wait!” Linda called-out, hurrying after her. “Please! I need to talk to you. It’s important.” When she caught up to Jeanie again, Linda pleaded, “It’s an important health matter.”

“I said get away from me,” Jeanie said sharply and kept walking.

Other people were all around, on the sidewalk, driving by. Linda noted the side-eyed glances they were getting and regretted them. If she could just get Jeanie to stop and talk, they could go back to Linda’s car and thereby have some privacy.

“I just need to talk with you,” she replied, mindful of her voice, even as she kept pace with Jeanie. “It could hurt your baby.”

“You don’t know anything about me,” Jeanie shot back picking up her pace.

Linda’s conservative pumps were no match for Jeanie loosely laced Nike’s. The skinny pregnant woman was agile despite the basketball-size passenger pouch in her middle, and Linda was falling behind. In a breach of protocol, she reached out and caught Jeanie’s arm and thankfully Jeanie stopped.

“You may have been exposed to syphilis,” Linda said a bit breathlessly. “You need to come to the clinic. You need treatment.”

“For what?”

“For syphilis,” Linda said softly.

“Who said I have syphilis? Nothing’s the matter with me.” Jeanie pulled away from Linda’s grasp. “How do you know. You don’t know anything about me.”

“I know your name. I knew where to find you.”

“Just ‘cause some bitch is talking bad about me don’t prove nothing.”

“Someone you had sex with, someone who cares about you. Who cares about your baby and wants to help you.”

“Who? Who says I had sex with them?”

“I can’t tell you. But please, is there somewhere we can talk privately? Do you live close by?”

“I’m not telling you where I live.”

“Okay, okay,” Linda hastily offered. “Let’s talk in my car.”

“I got nothing to say to you,” Jeanie cut her off.

“Like I said I’m from the health department,” said Linda again, once more offering her badge as proof. “Straight up,” she pleaded. “This is serious.”

“I don’t believe you,” Jeanie snapped, ignoring the badge in Linda’s outstretched hand.

“Look, you need to be treated. I can get you a free cab ride to the clinic.”

“No. Leave me alone.”

“How ‘bout this—I can take you. We’re not really supposed to, but I will. I’ll take you right now. You won’t even have to wait.”

There had been a time when DIS were regularly allowed to provide rides to the clinic in their personal cars. Driving a partner to the clinic usually guaranteed the person would be treated, and even fast-tracked for service. A high number of brought-to-treatment cases made for very good job performance statistics. Over time, however, as concerns about legal liabilities increased Linda’s health department program had ended the practice. But Linda was desperate. She could prevent a congenital case. Nothing was more important.

Jeanie said no to Linda’s offer. She was losing Jeanie, and really had never had her. Now Linda ratcheted up her tactics.

“I’ll have to contact the authorities if you don’t consent to testing and treatment. For the baby’s sake,” she threatened, attempting the illusion of leverage.

“I knew it!” Jeanie retorted. “You’re a cop. Well you gotta have a warrant. I’m not doing anything. You can’t just stop me. I know my rights.”

At that moment Linda wished she was a police officer. She wished for one to come along so she could enlist the aid. They could scare—force—Jeanie to come to the clinic. It would be quick. It would be dirty, but Jeanie’s baby would be protected. That was what mattered.

“What about your baby’s rights?” asked Linda desperately.

“Stay the hell away from me,” Jeanie shot back, storming off again.

This time Linda did not follow her. She could tell Jeanie was angry, maybe surprised too, and probably a little scared. It was common for people to resist treatment at first, to be in denial, but Linda believed with diligence she could bring Jeanie around and get her in for treatment. She had done it before. Jeanie just needed a little time to wrap her head around having an STD, Linda reasoned. If she pressed too hard and still got nowhere today, it might make Jeannie decide to disappear into the neighborhood and then she’d be that much harder to find again, which could spell bad news for Jeanie’s baby. Linda would give her some time and come back tomorrow.

Tomorrow came and so did Linda, but Jeanie was nowhere to be found. Linda visited the convenience store where she first saw Jeanie, and ate lunch in the neighborhood, on the lookout for Jeanie but to no avail. Had she made a mistake, Linda asked herself. All she could think about was the baby. She had to get Jeanie in for treatment. Linda was getting a little angry too; and a little scared. This could be a big fail.

During the weekly DISChalk-Talk meeting at the STD Clinic, Linda shared her frustrations. “I begged her,” Linda glumly reported to her colleagues. “It just made her mad. She kept saying I didn’t know anything about her. And who told me she had syphilis in the first place.” This was what the Chalk-Talk was for, a meeting for DIS to share and review challenging STD cases and help each other. Linda’s possible congenital case had everyone around the table fully engaged. At one time or another all of them had had patients and partners who refused treatment, but Linda’s case involved an innocent baby.

“What about the partner?” Nancy, one DIS, asked. “Maybe he can get her to come in.”

Linda was shaking her head.

“He doesn’t want to,” she replied. “There’s nothing there. I can’t say as I blame him,” Linda grumbled, thinking about her encounter with Jeanie. “Not sure what she’d do to him if she knew who it was.”

If Tony was her only sex partner, then Jeanie would be able to figure out on her own who had named her as a partner. If she had more than one partner, then it got—complicated.

“Anybody else get her named as a partner?” Ray, another DIS, asked.

Everyone shook their heads.

“What about Tony?” Charles asked the group. “Is he a partner to any of your cases?”

Again, everyone shook their heads no.

Although Tony did have other partners. He had given Linda two additional names. Nobody else was pregnant though, at least as far as Tony knew. But maybe there were other babies at risk.

“Well, we’ll keep working on it,” Charles said, ready to move to the next case. “Thanks, Linda. We aren’t giving up.”

“I wish I could get an address,” Linda said. “I’d camp-out at her front door. I swear I would.”

“We know you’re doing your best, Linda,” Charles assured her.

There were just too many Jeanies, too many Tonys for that matter. Syphilis was an easily treatable disease with one of the cheapest medications. All that was needed was penicillin.

“If she won’t come in,” Ray said, “We’ll get a nurse to go out and treat her.”

The other DIS around the conference room table agreed with Ray. Even Charles and Doris, the other supervisors, nodded their heads. They could bring the syphilis treatment to Jeanie, and maybe she would accept it. Maybe they could get a happy ending. Linda and her colleagues believed it was worth a shot.

But the STD clinic director, who frequently attended the DIS Chalk-Talks spoke up. “That’s not going to happen,” she said, dumping a proverbial bucket of water on the idea. “It wouldn’t be safe to treat her with injectable penicillin on the street. She’d probably refuse anyway.”

“But what about the baby,” Linda said.

“Even if I authorized and prescribed it and there was a safe location, nurses can be hesitant to administer Bicillin outside the clinic. What if we got a severe allergic reaction? Anaphylaxis could kill her, and we’d lose the baby anyway.”

“Dammit!” Ray swore under his breath.

Linda looked ready to cry.

“Is there somebody else who can talk to her,” asked April, another DIS at the table. Maybe Tony can give you a lead, you know somebody who can get to her. Somebody who can make her understand how important this is.”

Shaking her head, no, Supervisor Doris, said, “You know we can’t do that. Patient confidentiality.”

This time it was Tony’s and Jeanie’s.

“But it’s a baby!” April insisted.

“Maybe she’s not infected,” Linda finally muttered miserably.

In her head she went over the timeline she had been able to put together from Tony’s recollections. It was possible that Jeanie was not infected. So much depended on when Tony had had sex with her. Syphilis was sexually infectious to others usually only in the primary and secondary stages. Every exposure did not result in an infection. Linda could hope.

“We just have to get her to come in,” the clinic director said.

“Yes,” said Doris. “Let’s strategize on how we do that.”

Linda made several more visits to Jeanie’s neighborhood over the next 2 weeks. Ray went with her. They went to the county hospital and conducted a medical record search on Jeanie. If she had been there before, maybe they could find a doctor who could help them reach her. Maybe just maybe Jeanie was getting prenatal care. Linda and Ray’s search efforts were mainly fruitless. The hospital’s records for Jeanie revealed she had not been there for care in years, and the address they had on file was old and no longer valid. But at least the hospital staff agreed to flag Jeanie’s record to indicate that she was a named partner for infectious syphilis, if Jeanie did show up there for care.

Linda also conducted another interview with Tony, and this time Charles participated. They hoped that with another ask Tony could give them a current address for Jeanie, but he couldn’t.

“Or wouldn’t,” Charles complained to Linda afterwards. “I think he’s holding out on us. He has to know something.”

“Maybe,” Linda said. “Maybe not. They’re not like friends or something. It was just a hook-up.”

“A pregnant hook-up,” Charles said dryly.

“I guess so,” replied Linda darkly.

She was feeling defeated, convinced that a baby was going to be lost to congenital syphilis. The STD program was left with no option but to close Jeanie’s case, and hope for the best.

And on that Christmas Eve they got their chance for it. Jeanie came to the Emergency Room with a severe respiratory infection. Since her medical record was flagged for exposure to syphilis, the attending OB/GYN, following standard protocol, called the STD infectious disease doctor-on-call that night for a consult. The doctor-on-call happened to be the STD clinic director. Ecstatic with the good fortune the clinic director hurried to the hospital. She was sure they were going to get Jeanie treated and protect her baby after all.

A little while later in the OB/GYN’s office the clinic director’s optimism faded.

“She says she doesn’t have syphilis,” the OB/GYN informed the clinic director as soon as she sat down across the desk from her. “She’s refusing treatment.”

“She’s a partner,” the clinic director replied. “We can treat prophylactically.”

That was how they did it in the STD clinic, but the dubious frown shadowing the OB/GYN’s face, reminded the clinic director that a hospital setting was different from an STD clinic.

“It’s fine,” the clinic director tried assuring her colleague. “It won’t hurt if we overtreat. It’s for the good of the community, and in this case her baby. This is the public health standard of care.”

“I don’t know,” the OB/GYN said studying Jeanie’s chart. “I don’t think we can just —”.

“Yes,” the clinic director cut her off. “Yes, you can. I’m telling you, you can. You have to.”

“Let’s get her to take a test. If it shows she’s infected I’m sure we can persuade her to —”.

“The infection could be incubating, and we could get a false negative,” the clinic director interrupted the OB/GYN again. “Why don’t we just treat her. Please,” the clinic director begged. “Let’s not risk it.”

“If you don’t know she’s infected,” the OB/GYN replied. “How do you know the baby’s at risk?”

“Look,” the clinic director insisted. “She could be in the infection window. You see —”.

“Let me talk to the Chief,” this time the OB/GYN interrupted the clinic director.

They had the patient. They had the treatment. But it was still complicated, a classic conflict between Jeanie’s privacy, her individual rights and the health of her baby.

“And how long will that take?” the clinic director asked sharply.

The OB/GYN stiffened at her colleague’s tone.

“I understand your concern,” the OB/GYN said coolly. “But the patient does have rights.”

“What about the baby’s rights?” the clinic director asked.

“Our patient is the woman,” replied the OB/GYN.

Questions for Discussion

  1. 1.

    Who are the stakeholders (s) in this situation?

  2. 2.

    Can Jeanie be compelled to take treatment for syphilis to protect her unborn child?

  3. 3.

    Does Tony’s right to privacy trump Jeanie’s need to know who named her as a partner for syphilis?

  4. 4.

    What are Jeanie’s rights?

  5. 5.

    What is the balance between individual civil liberties and community health?

  6. 6.

    What could Linda have done to gain Jeanie’s cooperation leading to treatment?

  7. 7.

    How should the clinic director proceed?