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PSY699: Master of Arts in Psychology Capstone

Week Four Discussion Case File

Case Summary Client 1: Tina, a 36-year-old HIV-positive Latina woman

Client 2: Tina’s daughter, 12-year-old Victoria (also HIV positive)

Tina became infected through a former boyfriend who had a history of intravenous drug use.

Tina gave birth to an HIV-positive daughter, Victoria. Tina does not want Victoria to know that

either of them has HIV.

Victoria is now 12 years old and has been told by her mother that she takes medications for “a

problem in her blood.” Recently, Victoria stated that she does not like taking the medication and

occasionally misses doses. The clinic staff has raised the issue of whether Victoria should be told

about her diagnosis. They’ve warned Tina that in the near future, Victoria will be at an age at

which girls often become more interested in boys or sexual behavior. The clinic’s therapist feels

that if Victoria knew her diagnosis she might be more adherent to her regimen of medications.

However, Tina absolutely does not want her daughter to know. Tina believes Victoria is still too

young and will be emotionally devastated. Tina believes that it is her responsibility — and only

her responsibility as a mother — to “protect” her child, and that her daughter is “not ready” to

know. Tina also believes that Victoria is “a good girl” and will not be sexually active until she is

married.

The clinic’s therapist thinks Tina’s guilt about having transmitted the virus to her daughter is

causing her to take this stance. Still, the clinic staff is concerned and wants Tina to reconsider.

This situation presents several ethical dilemmas and requires further consultation.

2011; 33: e50–e56

WEB PAPER

The ethics of HIV testing and disclosure for healthcare professionals: What do our future doctors think?

JULIE M. AULTMAN1 & NICOLE J. BORGES2

1Northeastern Ohio Universities College of Medicine, USA, 2Wright State University Boonshoft School of Medicine, USA

Abstract

Aim: This study examined future medical professionals’ attitudes and beliefs regarding mandatory human immunodeficiency virus

(HIV) testing and disclosure.

Method: A total of 54 US medical students were interviewed regarding mandatory testing and disclosure of HIV status for both

patient and health care professional populations. Interviews were qualitatively analyzed using thematic analysis by the first author

and verified by the second author.

Results: Medical students considered a variety of perspectives, even placing themselves in the shoes of their patients or imagining

themselves as a healthcare professional with HIV. Mixed opinions were presented regarding the importance of HIV testing for

students coupled with a fear about school administration regarding HIV positive test results and the outcome of a student’s career.

Third- and fourth-year medical students felt that there should be no obligation to disclose one’s HIV status to patients, colleagues,

or employers. However, most of these students did feel that patients had an obligation to disclose their HIV status to healthcare

professionals.

Conclusion: This study gives medical educators a glimpse into what our future doctors think about HIV testing and disclosure, and

how difficult it is for them to recognize that they can be patients too, as they are conflicted by professional and personal values.

Introduction

The overall aim of this qualitative study is to gain a deeper

understanding of future doctors’ attitudes and beliefs regarding

mandatory human immunodeficiency virus (HIV) testing and

disclosure, and to explore current medical students’ personal

biases and stigmas surrounding HIV testing and disclosure.

Present and future doctors may face the challenges of having

to not only request that patients disclose their HIV status, but

also to decide whether to report one’s own HIV status to

patients, colleagues, and/or employing healthcare institutions.

By examining and identifying some of the beliefs and attitudes

surrounding such dilemmas, we believe this information can

be of help to medical educators as they work with medical

students and their clinical preceptors to resolve many of the

social and ethical problems associated with the stigma of HIV

disclosure, while improving the overall health of individuals

and communities. In addition to the presentation and analysis

of our data, we provide curriculum recommendations for

ethics education for HIV testing and disclosure for medical

students. First, we will provide descriptive background infor-

mation on HIV testing and disclosure.

HIV testing

In the United States, there are several private and public HIV

testing sites including free-standing clinics, hospitals, state

Practice points

. Present and future healthcare professionals may face the challenges of having to not only request that patients

disclose their HIV status, but also to decide whether to

report one’s own HIV status to patients, colleagues, and/

or employing healthcare institutions.

. Given the lack of knowledge about HIV testing, and the problems with anonymity, patients and HCWs alike,

even when knowledgeable in HIV treatment and pre-

vention, are often reluctant to get tested for HIV out of

fear that positive test results will affect reputations,

employment status and insurance benefits.

. Differences were noted among pre-clinical students (first- and second-year students) and clinical students

(third- and fourth-year students who have been fully

exposed to patient care) with respect to the duty to

patient care versus duty to oneself.

. By examining and identifying some of the beliefs and attitudes surrounding such dilemmas, this information

can be of help to medical educators as they work with

medical students and their clinical preceptors to resolve

many of the social and ethical problems associated with

the stigma of HIV disclosure, while improving the

overall health of individuals and communities.

Correspondence: J. M. Aultman, Department of Behavioral and Community Health Sciences, Northeastern Ohio Universities College of Medicine

and Pharmacy, 4209 State Route 44, PO Box 95, Rootstown, OH 44272-0095, USA. Tel: 330-325-6113; fax: 330-325-5911; email:

[email protected]

e50 ISSN 0142–159X print/ISSN 1466–187X online/11/010050–7 � 2011 Informa UK Ltd. DOI: 10.3109/0142159X.2011.530311

health departments, and clinician offices. Every state, along

with Guam, Puerto Rico, and the US Virgin Islands offers

confidential testing, where a person’s name is recorded with

test results, and 45 states including Guam and Puerto Rico,

offer anonymous testing, where no name is used or connected

to test results (Center for Disease Control 2005). In reporting

cases of HIV, almost every state uses names. Five states use

name-to-code reporting and eight states only use codes. While

it is important to test and report individuals with HIV to better

understand the spread of the disease, to develop better safety

and preventative measures, and to deliver needed healthcare

to those who are afflicted, there are several ethical concerns

about the procedures for testing and reporting. Globally, many

efforts have been made to develop surveillance and reporting

programs. For example, in 1999, a European HIV reporting

system including 39 countries of the World Health

Organization (WHO) European Region was developed for

AIDS reporting. Persons who test positive are identified in

various ways (e.g., names, codes/identification numbers) and

reported by clinicians and/or laboratory personnel depending

on the regulations of individual countries. D’Amelio et al.

revealed that 27% of the 121 countries evaluated have

legislative measures in place mandating HIV testing for

vulnerable populations (e.g., commercial sex workers, men

who have sex with men, injecting drug users; D’Amelio et al.

2001; Li et al. 2007). Worldwide, many individuals do not

know the differences between anonymous and confidential

testing,1 or if they are aware of mandatory testing and

reporting programs, they may refuse to get tested, realizing

with a positive result their names or identifying information

may be reported. For those individuals who are living in states

that do not give them the option for anonymity, they too are

less likely to get tested. Recently, recommendations by the

Center for Disease Control (CDC 2006) suggest that all adults

and adolescents (ages 13–64) should be given voluntary,

automatic, and routine HIV tests upon entering a healthcare

facility so as to normalize HIV screening as a routine part of

medical care. Marcia Angell argues there is a need for HIV

testing to become more routine (Angell 1991). Using an ‘‘opt-

out’’ approach, individuals may have the opportunity to

decline testing, but healthcare workers (HCWs) are obligated

to provide basic information about HIV, including what

positive and negative test results mean. Although these

recommendations may help to normalize the HIV screening

process, there may be no options for anonymity, which may

persuade individuals to opt-out, or even forgo medical

attention altogether out of fear of being tested without prior

consent.

Given the lack of knowledge about HIV testing, and the

problems with anonymity, patients and HCWs alike, even

when knowledgeable in HIV treatment and prevention, are

often reluctant to get tested for HIV out of fear that positive test

results will affect reputations, employment status and insur-

ance benefits. Although previous studies have critically eval-

uated both patients’ and HCWs’ perspectives regarding HIV

testing and disclosure (see, for example, Dixon-Mueller 2007;

Galletly et al. 2008; Kagan et al. 2008; Tesoriero et al. 2008),

there are few recent studies examining medical students’

perspectives (see e.g., Evans et al. 1993).

HIV disclosure

When tackling the issue of HIV disclosure, most studies focus

on whether patients have a duty to disclose their HIV status to

their partners and to healthcare professionals so as to acquire

needed therapies and treatments, as well as to protect

healthcare professionals from even the slightest possible

exposure. Many critics conclude that patients do have a duty

to disclose their HIV status to their partners, to anyone who

may be susceptible to HIV transmission, or to those profes-

sionals who are obligated to provide care and treatment.

Under this popular line of reasoning, supported by the CDC,

the American Medical Association, among other health orga-

nizations, a public health ethic appears to take precedent over

individual freedoms and the right to privacy. However, when

tackling the issue as to whether HCWs also have a duty to

disclose their HIV status to their patients (Perry et al. 2006),

there is little consensus as to whether disclosure is valuable,

especially given the low probability of transmission. In 1991,

CDC recommended that infected HCWs with HIV or Hepatitis

B should not perform exposure prone procedures unless they

have ‘‘sought council from an expert review panel and [have]

been advised under what circumstances, if any, they may

continue to perform these procedures.’’ The CDC defined an

exposure-prone procedure to include ‘‘digital palpitation of a

needle tip in a body cavity or the simultaneous presence of the

health care worker’s fingers and a needle or other sharp

instrument or object in a poorly visualized anatomic site.’’ And,

even if the panels permit them to practice, it is recommended

that HCWs must still inform patients of their serologic status

(Gostin 2000). The American Medical Association’s policy on

HIV disclosure reads, ‘‘HIV infected physicians should disclose

their HIV seropositivity to a public health officer or a local

review committee, and should refrain from doing procedures

that pose a significant risk of HIV transmission, or perform

those procedures only with the consent of the patient and the

permission of the local review committee.’’ Furthermore, ‘‘A

physician who has HIV disease or who is seropositive should

consult colleagues as to which activities the physician can

pursue without creating a risk to patients’’ (Blumenreich 1993).

Marcia Angell in ‘‘A Dual Approach to the AIDS Epidemic,’’

wrote that patients have a right to know whether a doctor or

nurse who performs invasive procedures is infected with HIV.

Infected HCWs should refrain from invasive procedures, or

should expect to have reasonable alternative work

(Blumenreich 1993). Nevertheless, the 1995 Clinton adminis-

tration instructed CDC to review its guidelines that arbitrarily

restrict HIV infected HCWs, which possibly lead to

discrimination.

Critics, such as American Law Professor, Gostin, have

proposed new national policies, emphasizing patient safety by

ensuring that infection control procedures are systematically

implemented in healthcare settings, which would focus on

‘‘safer systems of practice rather than excluding and stigma-

tizing infected healthcare workers’’ (Gostin 2000).

Furthermore, Gostin argues that while a physician may

choose to put the patient first by disclosing his or her status,

the law should not require HCWs to disclose their HIV status,

since it is an invasion of the privacy of the HCW, and a

The ethics of HIV testing and disclosure

e51

possible professional detriment to the therapeutic relationship

following such an emotional and unsettling conversation with

patients. That is, since the HIV infected HCW is also a patient,

disclosure may be embarrassing and damaging to one’s

professional reputation. Besides the fear of discrimination

and the view that disclosure is an invasion of privacy, Gostin

and others believe that since the risk of HIV transmission from

HCW to patient is too low to meet the legal standard for

disclosure, informed consent guidelines and laws should not

require HIV infected HCWs to disclose their status to patients.

But if disclosure may be embarrassing and damaging to a

HCWs medical career or transmission is too low to meet the

legal standard for disclosure, it would seem as though patients,

just as HCWs, should not be required to disclose their HIV

status when seeking non-invasive care, which may not be

relevant to the treatment and monitoring of HIV. Nonetheless,

healthcare professionals purport, simply for preventing harm

to self and other, the HIV status of patients should be known

regardless of the level of harm in diagnosing, monitoring, or

treating patients for related and non-related conditions and

preventative care.

In the following study, these ethical issues are tackled by

our medical student-participants – our future doctors, whose

perspectives regarding HIV testing and disclosure for both

patients and HCWs give us insight into their critical thoughts

and ethical decision-making regarding personal and patient

care, and whether guidelines such as those created by the CDC

will be followed, or ignored, by our future physicians whether

they practice nationally or internationally with different

guidelines and laws.

Methods

During 2006–2007, a total of nine focus groups, containing 54

volunteer student-participants (34 females and 20 males),

ranging in ages 18–26, from two, four-year medical schools in

the United States, were interviewed by the investigators of this

qualitative study. Both medical institutions have an equal ratio

of males and females enrolled (50 : 50); however, there is an

unexplainable disproportionate number of female students

who volunteered at each level of their medical education

(years 1–4). All medical students were invited to participate via

email invitations and in-person classroom announcements,

both of which included an informational sheet describing the

study and role of voluntary participants (e.g., students may

freely accept or decline participating in the study, any student

who participates may leave the study at any point). Full

institutional review board (IRB) approval was obtained prior to

the start of the study. Six focus groups, containing 30 first- and

second-year students (19 females and 11 males) were inter-

viewed during their non-clinical training at their respective

medical schools. Three focus groups, containing 24 third- and

fourth-year medical students (15 females and 9 males), were

interviewed during their clinical training at their respective

medical schools, with the exception of three, third-year

medical students (3 males) who were interviewed during a

psychiatry clinical rotation at a local hospital. All IRB guide-

lines and ethical procedures were followed (i.e., informed

consent). All student-participants were asked a pre-established

set of general, open-ended questions regarding mandatory

testing and disclosure of HIV status for both patient and health

care professional populations. The open-endedness of these

questions, commonly used in qualitative research, prompted

students to verbalize their interpretations of concepts (e.g.,

‘‘compulsory’’ or ‘‘mandatory’’) and freely give their opinions

on difficult, ethical and professional issues, which enabled the

investigators to gain data with a range of attitudes and beliefs.

The pre-established, general questions used in the recorded

interviews are as follows:

(1) Do you think medical students should be tested for

HIV? How about physicians? Other healthcare

professionals?

(2) Should HIV testing be voluntary or mandatory? Why or

why not?

(3) Do you think that patients should disclose their HIV

status to their physician?

(4) Are there any circumstances under which a patient

should not disclose this information about their health

status?

(5) If a physician has HIV, do you think he/she should

disclose this to his/her patients? Please explain why or

why not.

These pre-established questions comprise the first part of this

study; a separate set of questions focusing on current medical

students’ perspective on and use of universal precautions

comprise the second part of the study and findings are

reported in a separate paper titled ‘‘The ethical and pedagog-

ical effects of modeling ‘not-so-universal’ precautions’’.

Interviews for the first part of this study were conducted for

30–45 minutes, while focus group interviews for the entire

project lasted 60–75 minutes. Investigators used a hand-held,

digital audio recorder to record all interviews. Project inves-

tigators took hand-written notes during each focus group,

alerting them to significant points and patterns of experiences,

beliefs, and attitudes. All recorded interviews were transcribed.

Names and other identifiers that were verbalized by students

during the focus group sessions were not transcribed.

Transcripts were qualitatively evaluated by the project inves-

tigators individually and then collectively to ensure that

emerging themes in the data were objectively identified and

analyzed using thematic data analysis, whereby repetitive

themes emerged from students’ responses and meaning units

were recorded and coded. The project investigators included

the authors of this article, both of whom also conducted the

focus groups at their respective institutions; the first author

analyzed the data, and the second author verified the analysis.

Data from students’ answers (from the above questions and

discussion that followed) were divided into two significant

categories: HIV testing and HIV disclosure.

Results

In general, there were no identifiable differences in the reports

given by medical student-participants from the two medical

schools. In addition, there were no identifiable differences in

responses among males and females. However, there were

significant differences among pre-clinical students (first- and

J. M. Aultman & N. J. Borges

e52

second-year students) and clinical students (third- and fourth-

year students who have been fully exposed to patient care)

with respect to the duty to patient care versus duty to oneself.

Although most students expressed their personal opinions,

many students provided insightful, constructive, well-sup-

ported arguments surrounding HIV testing and disclosure,

often placing themselves in the shoes of their patients or

reflectively thinking on what it would be like to be a physician

with HIV. The focus groups conducted were useful not only

for the purposes of this study, but also for students’ medical

education by giving them an opportunity to discuss and reflect

upon a controversial topic in medicine and public health.

Specific results from this study are divided into two primary

sections, ‘‘HIV testing’’ and ‘‘HIV disclosure,’’ along with

relevant sub-sections.

HIV testing

Do you think medical students should be tested for HIV? How

about physicians? Other healthcare professionals?

In response to the first focus group question, first- and second-

year students at both medical schools reported that testing can

reduce the social stigma associated with HIV; by having every

student experience the testing procedures from ‘‘a patient’s

perspective’’, along with a formal education about HIV from

clinical, psychological, and social perspectives, the stigma

could be reduced and students would be better informed to

help their patients and themselves in the prevention and

treatment of HIV. The majority of students who supported HIV

testing in medical school (or when they became licensed

physicians) felt that testing for HIV is an important step toward

physically and emotionally caring for themselves and their

patients. They also recognized that attitudes and beliefs may

positively change in ways that alleviate current stigma as HIV

screening increases or becomes a normalized practice.

However, not all students supported HIV testing for medical

students and/or healthcare professionals.

A total of nine first- and second-year students at both

medical schools feared the consequences of the HIV tests.

Their greatest fear was that of the medical school or

administration finding out about any risk factors (drug use0

or positive test results, which, they believe, would ruin

students’ future medical careers. They expressed they would

not be valued or accepted as an HIV professional, which

interestingly, provoked students to think about what patients

may feel and think with respect to their own professional lives.

Students from both medical schools feared their privacy would

not be protected and that positive results would show up on

their permanent records. One male first-year student explained

that he would not want to get tested for incurable STDs

‘‘because of the possibility of the school finding out.’’ Other

students reported that because the transmission rate was so

small, and universal precautions were in place, there would be

no need to get tested. Twelve students at each stage in the

four-year medical school curriculum explicitly argued that only

those who are at risk for HIV should be tested, but that testing

should be voluntary regardless of the risks to patients and

colleagues. Students from both medical schools (approxi-

mately 75%, or 40 out of 54 clinical and non-clinical) reported

that if healthcare professionals were tested positive for HIV,

negative consequences, such as lawsuits, loss of medical

licenses, and limited patient interaction, could occur. Rather

than directly answering the focus group question, third-year

students at both medical schools were inquisitive and asked

about the benefits of knowing the results of an HIV test as it

relates to the safety and protection of others. After re-directing

their questions and answers (when dialogue got ‘‘off-track’’) by

asking how they felt about being tested as medical students,

these third-year students felt that tests should be given to

healthcare professionals only if there is a significant transmis-

sion rate from physician to patient. Two fourth-year students at

one medical school added that ‘‘testing is expensive’’ and

some people, especially medical students, may not be able to

pay for the tests. The availability and accessibility of medical

resources needed to test medical students and healthcare

professionals alike was a general concern among the fourth-

year students, as well as how information gained from the tests

is going to be used (e.g., will information hurt your potential to

get insurance). Overall, there was little concern regarding the

possibilities of transmission of HIV from physician to patient.

Mandatory testing

Should HIV testing be voluntary or mandatory? Why or

why not?

It was duly noted among first through third-year medical

students at both institutions that the stigma becomes reduced

when testing is mandatory. First-year students at one medical

school indicated that mandatory testing may help more people

get treatment. A first-year student at the second medical school

indicated that ‘‘if we are not disclosing information about

ourselves then I don’t think we can ask our patients to provide

the information – no double standard.’’ Another student

reported, ‘‘I think I would lean towards HIV testing be

voluntary instead of mandatory. I really value having individ-

ual rights.’’ However, another first-year student stated, ‘‘I

would say mandatory. It’s just like. . .like our pap smears and

we test for that annually, and it’s not stigmatized. I don’t see

why we couldn’t do the same thing with HIV. Encourage

women and men to get their annual HIV test if they, or you

know, at least every few years. . .’’

Second-year students generally thought that so long as laws

(or guidelines) were in place to protect discrimination,

healthcare professionals and students should be mandatorily

tested. A female second-year student, echoing the same

sentiment, suggested that testing be anonymous and confi-

dential if it were to be mandatory. Another second-year

student felt that one would be more likely to pay attention [to

universal precautions] if a person’s HIV status were known.

While first- and second-year students from both medical

schools indicated the stigma would be greatly reduced with

mandatory testing, third- and fourth-year students felt that

discrimination would occur and the stigma would continue to

exist, even tho

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