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Ethical considerations in dermatologic photography
Clinics in Dermatology (2012) 30, 486–491
Ethical considerations in dermatologic photography Nikita Lakdawala, MSIII, Demian Fontanella, JD, CMA, Jane M. Grant-Kels, MD ⁎ Department of Dermatology, University of Connecticut Health Center, 21 South Road, Farmington, CT 06030-6231, USA
Abstract In dermatology, clinical photographs are an essential component of patient care, enabling clinicians to document changes in skin pathology over time. Recent advances in digital technology and the electronic medical record have revolutionized clinical photography; however, these advances bring with them new ethical, legal, and social concerns. Photographs, more than other forms of documentation, have the potential to make patients uncomfortable. The act of photography, especially for those images requiring exposure of the genital area or the entire body, can be an uncomfortable experience for patients, necessitating the clinician and photographer to take an empathic stance in this setting. The Internet has elicited an increasing, and a very real, concern for patients about possible distribution and use of images outside of their individual care. The clinician and staff can allay these fears by professionally and empathetically addressing their concerns. In addition, it is important that patients receive appropriate informed consent about clinical photographs and the potential use of the images in their care, education, and research. Given the multitude of methods for recording clinical photographs, combined with the increasing complexity of image storage, standardization becomes a critical tool in providing consistency among images and achieving more equitable and efficacious care. To achieve this goal and improve the baseline standard of continuity of care for dermatological practices, we review the role of photographs, develop a model for patient consent, and establish standards for photography so as to provide the most ethical care for the patient. © 2012 Elsevier Inc. All rights reserved.
Case A 4-year-old boy was brought to a dermatologist by his mother with a referral from his pediatrician to assess a small to moderately sized congenital melanocytic nevus located in the genital area. The dermatologist discussed the possible risks of melanoma and options with the mother, including complete or partial surgical excision, and observation. Due to esthetic and functional concerns, difficulty with complete resection, and controversy in relation to the malignant potential of small and moderately sized congenital melanocytic nevi, it was decided that observation was the best option. 1,2 The lesion was then photographed and measured. After the photograph was taken as a baseline for the medical record, the mother expressed concern that the picture of her ⁎ Corresponding author. Tel.: +1 860 679 3474; fax: +1 860 679 1267. E-mail address: [email protected] (J.M. Grant-Kels). 0738-081X/$ – see front matter © 2012 Elsevier Inc. All rights reserved. doi:10.1016/j.clindermatol.2011.06.017
child's nevus included the genital area. In an Internet-based era, she feared that it could be easily “disseminated”. Without including the genital region, the melanocytic lesion could not be accurately captured, and thus, adequately monitored for future changes. The family's right to privacy and autonomy contrasted with the standard of care for observation and follow-up of the melanocytic nevus. To alleviate the mother's concerns, the first photograph was destroyed, leaving no baseline photograph for future evaluation of the young patient. Although a detailed description of the congenital melanocytic nevus was included in the medical record, it could not replicate the diagnostic and follow-up benefit from a simple, single picture.
Introduction In dermatology, a picture really is worth a thousand words. Illustrations of dermatological conditions have been
Ethical considerations in dermatologic photography used for centuries, with some of the earliest dating back to the 14th century when syphilis was rampant in Europe. 3 As constant improvements in imaging technology and software continue to augment our diagnostic and treatment capabilities, with increased image resolution and total body photography systems, a patient's right to privacy and ethical treatment may be compromised in ways that have never before been plausible. 4 Dermatological photographs are crucial tools in tracking the progression of skin lesions, with implications for general dermatology, cosmetic dermatology, and dermatologic surgery. Total body photography can help the dermatologist detect new lesions or even minute changes in existing melanocytic nevi. 5 This can decrease patient and physician anxiety about adequate detection of changes in melanocytic nevi, reduce biopsies, and, most importantly, promote early identification and treatment of melanoma. 5,6 However, despite its clear benefits, the digital era also brings a myriad of legal, ethical, and psychosocial challenges. The ease with which digital images can be distributed for medical education, publication in textbooks, journals, and via the Internet; and the advent of the electronic medical record (EMR) expose patient photographs and privacy to a greater degree of risk than ever before. 7 How can we balance the obvious medical benefit patients receive through the use of digital imaging with their right and expectation of confidentiality and privacy? Meticulous attention to the principles and elements of informed consent, clear, uniform standards for the recording, storage, and dissemination of the images; and an empathetic perspective of each patient's fears of the use of these photographs represent a good beginning in the professional and ethical management of their care.
The right to privacy and informed consent The principles of the patient-physician relationship are well established—beneficence, integrity, fidelity, confidentiality, and more. 8 Chief among these is the concept of patient autonomy, whereby each patient maintains control over his or her body and decisions affecting his or her medical care. An important means of ensuring that each patient remains an educated partner with the physician in their care is the doctrine of informed medical consent. This process provides a legal and ethical framework within which the patient-physician relationship can operate. The increasing prevalence and use of clinical photography as an important diagnostic tool, in addition to its function as an educational device, requires its incorporation into and a corresponding evolution of the consent process to adequately account for its inherent complexities. There has been much debate and analysis in Europe assessing the legal and ethical aspects of clinical photography, with countless national advisory boards continually reviewing and updating recommended protocols 9; however, in the United States there has yet to be a serious, systematic look at this issue.
487 The intent of the medical informed consent process is to certify that the physician has educated the patient about the proposed treatment, any alternatives, and the associated risks and benefits of each. Within the medical-surgical context, this is relatively straightforward—treatment options are generally known, as are the related risks. Applying the informed consent doctrine to clinical photography introduces a measure of uncertainty concerning the form and degree of risk associated with the process. When a patient consents to the excisional removal of a malignancy, the benefit is clear and any risks will likely manifest during a finite period and within the parameters of the consent. The risk is known and is unlikely to change once the procedure has been completed. Clinical photographs, conversely, exist in a dynamic environment, as do the associated risks. Risk may be legally defined as exposure to a possibility of injury or loss and is composed of 2 primary elements: (1) the likelihood of an injury or loss occurring and (2) the actual injury or loss. 10 The primary risk, or likelihood of injury, associated with the use of clinical photographs is unauthorized disclosure or dissemination of the images. As part of the medical record, photographs are subject to the same safeguards as other elements of the record, consent and confidentiality included. 11 A patient's agreement to be treated represents implicit consent to a physician's use and maintenance of his or her medical record, oftentimes including the possibility of publication. Despite this, the patient's risk for a loss of privacy from a physician's use of written or dictated medical notes is far different from that represented by clinical photographs. Although de-identification of patient information in writing is extremely easy, as physicians may omit the use of a name, or use pseudonyms, and other readily identifiable information, the visual nature of photographs brings a new level of uncertainty concerning the physician's ability to protect the patient's confidentiality. The evolution and incorporation of information management and technology into medical practice, the increasing use of EMRs, and the prevalence of lapses in security all play an important role in the assessment of risk of clinical photography as a diagnostic tool. Without digital imaging, clinicians, and correspondingly the patient, would be at a disadvantage in the professional and ethical management of the disease process. The clinician's moral, legal, and ethical obligation to discuss the risks of digital imaging must include all reasonably foreseeable adverse outcomes, else the patient's ability to truly give informed consent may be called into question. How far must clinicians go in attempting to educate their patients about the risks of using clinical photography in their care? At minimum, the consent must include a clear understanding of the purpose of the photography, the risks of failure to consent to them, and an explanation of the security and confidentiality of the photographs. 12 Beyond this basic information, it is critical that the patient understand several key elements: (1) that their treatment
488 will in no way be affected by their refusal to consent, (2) that they may withdraw their consent for any or all use of the images at any time, and, most importantly, (3) that once the images have been published, either through publication or education, they are a part of the public domain and may be impossible to remove. Historically, physicians have attempted to account for this inherent risk through deidentifying patients, but it is most difficult to truly know what would be an identifying characteristic for each patient. Modifying the photograph by blocking the patient's eyes or any obviously identifying marks (as a melanocytic nevus, hemangioma, or tattoo) is not absolute. Even in those instances where every attempt is made to de-identify the patient, it is important to fully consent patients so that they have awareness of and choice in participating in the risk. Although possible and most practical to include consent for clinical photography within the standard clinical consent for a procedure, it is strongly recommended that an independent consent is used. This consent should clearly identify the subject matter of the photograph and allow the patient to choose how the photographs will be used, differentiating for use in the clinical record, for education, and for publication 13 (Appendices A and B). Another component of consent in clinical photography arises when the patient is a minor, or is incapable of providing informed, legal consent. In most cases, obtaining consent will not be complicated but, as in the case study at the beginning of this paper, in some instances a patient's or the parents' level of discomfort with the clinical photographic record may be at odds with its diagnostic benefit. Although the same principles apply when consenting a minor, there is an additional component to be cognizant of. Once minors reach majority, or patients gain capacity, they attain the right to withdraw consent at any time. In the case of a 4-year-old, this is less likely to be as problematic as with an older child, who may have opposed the initial photography. By including the minor in the consent decision, as much as is reasonable dependent upon their age, the physician can simultaneously promote a positive relationship with the patient and increase the child's participation in his or her own medical decisions, minimizing the chance that he or she will later withdraw consent. The zealous maintenance of the patient's right to privacy requires that clinical photographs remain secure and confidential. Impending advances in EMR management, in conjunction with a legislative movement toward total EMR, potentially jeopardize that safety. The intent of digitizing patient records is to increase the efficiency and decrease the cost of medicine. Through easier clinical access to patient records, physicians may be able to instantly view a patient's medical history, diminishing the prospect of mistreatment, or redundant treatment, because of a lack of information. The mechanisms that will make possible this technological leap have yet to be finalized, but concerns over unnecessary access to patient records remain at the forefront of the debate. Until we have a clearer understanding about how and to what degree patient records will be secured, and how access will
N. Lakdawala et al. be limited, it is important to realize that patient fears of unwanted dissemination of potentially intimate or unflattering photographs are valid and warrant consideration.
Standardization/Security of medical photography As use of digital photography as an integral part of the patient's treatment continues to grow, so does the need for a degree of uniformity in how those photographs are recorded. Despite the inherent risks in EMR, the ability to have easy access to high-quality digital images of patients' lesions can increase detection of malignancies at a much higher rate and at much earlier stages than ever before. Failure to record these images in a consistent manner has the potential to result in (1) harm to the patient, (2) ethical concerns regarding patient privacy and confidentiality, and (3) potential liability for the physician. The increasing prevalence of total body imaging systems and software, where patients with large numbers of lesions have their entire cutaneous surface photographed, has resulted in effective and standardized systems to capture and store clinical photographs. Total body photography (TBP) has gained popularity over time with approximately 40% of academic centers using this modality in 1992 to just over two-thirds in 2002. 5 Academic institutions and private practices use TBP with the goal of reducing the number of biopsies required and yet be able to detect melanoma at its earlier stages. 5 Total body mapping requires that the patient's skin is photographed in a predetermined pattern, with the same settings, in a controlled environment. This degree of precision permits very accurate comparisons of individual lesions over time, making even minute changes detectible. In follow-up visits, patients reproduce the poses with the original image set serving as a reference point so that the physician may compare. Unfortunately, this degree of standardization does not exist in all clinical environments. Images are recorded using camera phones, small point-and-shoot cameras, or larger SLR cameras. Subsequently the resolution at which each image is recorded will vary, as will the lighting, distance, orientation, and inclusion of landmarks for later identification. Although the use of digital imaging has tremendous potential to enhance early diagnosis of malignancies before they become dangerous, without consistency and standardization in the use of digital imaging as a diagnostic tool, many lesions will go undetected merely because no practical comparison can be made with prior studies. As digital imaging becomes more accepted as a diagnostic tool, much like routine labs or radiological studies, patients will come to expect a greater level of accuracy and reliability in these images. In Europe, national protocols exist that establish clinical photographic standards and accounting for professional clinical photographers. 14 Although this practice is followed in some practices in the United States, it is the
Ethical considerations in dermatologic photography exception. Realistically, the inclusion of a dedicated clinical photographer, with a controlled area for recording the images, is impractical and cost prohibitive; nevertheless, even staff without technological savvy can easily be trained to take photographs in a consistent manner, so long as certain basic considerations are accounted for. Consistent lighting, generally through the use of a ring flash, will provide consistency in coloration of the area. Standard distances from the lesion, or in some cases, a set range of distances, preset aperture and shutter settings, and some means of identifying size are also important criteria for equitable comparison.
Explicit photography Within the realm of medical photography, genital and full-body photography merits separate attention. In discussions of medical photography, it has been said that “the photograph generates an ambiguous relationship with the idea of identity. It can in turn lay it bare, exploit it, reveal and embody it. It creates an image which takes on its own existence separately from the person portrayed.” 15 Although most patients do not project a strong sense of self-identity upon any single medical photograph, the likelihood of this is greater with imaging of intimate areas such as the breasts, genitals, or more extensive naked areas of the body. It is, therefore, important that we consider the psychological impact of both the act of photography and the photograph itself in relation to this specific subset of images. Patient responses to photography will inevitably vary depending on their medical condition, age, sex, and the environment in which they are photographed 16 ; however, established standards in medical imaging can protect the patient's privacy, foster trust and security with the providers, and minimize the amount of distress for the patient. 16 Although the body of literature discussing the psychological and emotional impact of photography is sparse, one extreme but illustrative example of this dates back to the 1960s, when several full body images of “intersex” women were included in a British journal in reviewing complete androgen insensitivity (CAIS) without prior consent from the patients' parents. 16 Years later, in another journal, two of these women had the opportunity to speak about the sense of humiliation and shame they had felt in finding their photographs from years past in published literature. Negative associations and stigma associated with their condition affected the patients' view of photography, making them feel objectified and diminished. 16 One woman, only 3 years old when the photographs were taken, discussed that her facial expression in the published photographs showed the trauma she experienced and expressed an inability to find justification for inclusion of full-body naked images in her medical record or in the journals other than for a “spectacle.” 16 This situation highlighted the multidimensional ethical dilemmas in clinical photography and the need for discussion with patient and family before any imaging.
489 Although it occurred decades earlier, the issues in this case bear resemblance to those in the anecdotal case at the beginning of this article. Both pertain to pediatric patients where medical photographs were obtained and the mothers' concerns were elicited after the fact. As photography of the genital area can be a stressful experience for parent and child, educating them about the procedure can help them to anticipate the process and, thereby, partially alleviate related anxiety. A less than optimal experience with any aspect of care, including photography, for the patient or the family may ultimately reflect on the clinician, affecting the patient's confidence and creating a barrier for patient care. Informed consent, including a discussion of the medical necessity, storage, and uses of the photography can also help to obviate the very real concerns of “dissemination” with digital imaging. In fact, it has been shown that engaging the full discussion about the implications of imaging does not prevent most patients from agreeing to medical photography. 7 These cases illustrate the importance that must be given to minimize the number of identifiable features included in the photograph. A patient's face is easily the most identifiable anatomical feature, and should be avoided if possible. Although modifying the image to block irrelevant features may help preserve a patient's privacy, it does not preclude the possibility that he or she may be recognized. 17 Scars, melanocytic nevi, other birthmarks, and even tattoos are especially recognizable to those familiar with the patient and cannot always be avoided. In fact, these identifiable regions may be the lesions requiring documentation; therefore, it is important that the smallest area possible be recorded so as to reduce identifiers, while maintaining the diagnostic integrity of the photograph. Total body imaging embodies the full spectrum of medical, legal, ethical, and diagnostic issues that clinicians will encounter. Although patients value TBP as an important part of their care, sensitivity to the process needs to be displayed in the clinical setting. Despite the clear benefits of TBP, many patients are uncomfortable and embarrassed about being photographed naked. Most often, it is a member of the staff rather than the clinician who takes the photographs, and although it is important for the staff member to be aware of the consent process, the ultimate responsibility for obtaining a patient's consent falls to the physician. As the primary patient contact, the clinical staff must be respectful of patients' privacy and cognizant of their concerns, in addition to demonstrating confidence and competence as the photographer. There are several fairly simple elements that can help to preserve a patient's level of comfort during this process: (1) full informed consent; (2) standard professional, comfortable, and private environment in which to take the photograph; (3) staff who have an appreciation for the patient's concerns; (4) use of gender-appropriate chaperones when necessary; (5) minimal body exposure at the time photography; (6) minimization of the area of the
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body being photographed; (7) avoidance of inclusion of the face unless necessary. 7 Adherence to these principles can give the patient a feeling of being understood and respected and may help to achieve better compliance with initial photography. 18,19
Conclusions Improvements in digital imaging technology have enhanced the efficiency in taking photographs and the resolution of medical images. It has become an invaluable asset in many fields, but especially in dermatology, it has become the “standard of care” offering the most benign and effective methodology to observe progression of dermatologic lesions over time and assess surgical and cosmetic outcomes. As imaging continuously evolves, we must also simultaneously reevaluate the protocol for consent for medical photography so as to appropriately inform the patient. Fully informed written consent for images, identifiable and nonidentifiable, is required. The specific uses of the images, whether for the medical record, for educational purposes, or for publication, should be discussed with the
patients and appropriately documented in the consent form. We also must address how to best store, protect, and use images with the advent of the EMR. Finally, photographers should be trained in the consent process, in imaging with standards of reference to distance, size, and location, and in recognizing patient concerns with special attention to photography of intimate areas of the body. With the EMR, an additional layer of consent is required for patients because of the increased risk that images may be accessed by others. Europe has made great strides in considering the ethics and legality of videos and photographs in medicine and has formulated models for physicians across all fields to follow. 14,15,17 Their models serve as a reminder for us to begin our discussions as digital photography becomes a standard documentation tool in dermatology. Thus, before we take out our smartphones or digital cameras to capture interesting findings that abound in a typical day in the clinic, we should take a step back to consider the paradigm that we have already adopted: that patients are the owners of their images and that we must protect their right to autonomy and privacy. 15,17 In doing so, patients will hopefully accept imaging as part of their ethical care and trust that these images will be used appropriately.
Appendix A. Standard consent Consent for Clinical Photography I, ______________________, agree to permit medical photographs to be taken of me. By signing, I acknowledge that the terms of this consent have been explained to me in a clear and understandable manner. I am aware that the photographs will become a part of my medical record, and may also be used for medical teaching, or published in medical textbooks or journals, dependent upon the authorization I provide below. I am aware that refusal to agree to permit medical photographs to be taken of me will in no way affect the medical care that will be provided to me. I further acknowledge that consenting to have photographs taken of me in no way entitles me to any form of compensation from their potential future use. In addition, I understand that I may withdraw or modify this consent at any time, with the realization that once these images are published, either in written or electronic format, they will remain a part of the public domain despite any modifications I may choose to make. 1) I agree that these photographs may be used for teaching purposes, as well as become a part of my medical record. In addition, I consent to the use of these photographs in medical publications, including medical textbooks, journals and electronic media. I am aware that members of the general public may view these images, as well as medical researchers, professionals, and scientists. Despite assurances that every effort will be made to remove any identifying elements from the photographs, I acknowledge that it is possible that someone may recognize me. _________________________ _________________________ _________ Patient/ _____________ Witness Date 2) I consent to the use of these photographs as a part of my medical record and for teaching, but NOT for medical publication in any format. _________________________ _________________________ _________ Patient/ _____________ Witness Date 3) I agree that these photographs shall be used only as a part of my medical record. _________________________ _________________________ _________ Patient/ _____________ Witness Date
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These images will be stored and/or utilized in the following location(s): ____________________________________________ ____________________________________________________________________________________________________ Patients ages 7 through 17 years old: I understand the terms above, and also understand that I may withdraw this consent once I reach 18 years of age. Print Name: _______________________ Date: ________ Sign Name: ______________________
Appendix B. Short form consent Consent for Clinical Photography I, ______________________, agree to permit medical photographs to be taken of me and acknowledge that the terms of this consent have been explained to me in a clear and understandable manner. Each section signed by me indicates my consent to the use described within that clause. I am aware that publication may result in members of the general public viewing these images. Patient: __________________ Date: __________ Patient: __________________ Date: __________ Patient: __________________ Date: __________
1) I agree that these photographs shall be used as a part of my medical record. 2) I agree that these photographs may be used for teaching purposes. 3) I consent to the use of these photographs in medical publications, including medical textbooks, journals, and electronic media.
Witness: ____________________ Date: __________ These images will be stored and/or utilized in the following location(s): ______________________________________ ______________________________________ Patients ages 7 through 17 years old: I understand the terms above, and also understand that I may withdraw this consent once I reach 18 years of age. Print Name: _______________________ Date: ________ Sign Name: ______________________
References 1. Tannous ZS, Mihm Jr MC, Sober AJ, et al. Congenital melanocytic nevi: clinical and histopathologic features, risk of melanoma, and clinical management. J Am Acad Dermatol 2005;52:197-203. 2. Watt AJ, Kotsis SV, Chung KC. Risk of melanoma arising in large congenital melanocytic nevi: a systematic review. Plast Reconstr Surg 2004;113:1968-74. 3. Neuse WH, Neumann NJ, Lehmann P, et al. The history of photography in dermatology. Milestones from the roots to the 20th century. Arch Dermatol 1996;132:1492-8. 4. Windsor JS, Rodway GW, Middleton PM, et al. Digital photography. Postgrad Med J 2006;82:688-92. 5. Terushkin V, Oliveria SA, Marghoob AA, et al. Use of and beliefs about total body photography and dermatoscopy among US dermatology training programs: an update. J Am Acad Dermatol 2010;62: 794-803. 6. Feit NE, Dusza SW, Marghoob AA. Melanomas detected with the aid of total cutaneous photography. Br J Dermatol 2004;150:706-14. 7. Hood CA, Hope T, Dove P. Videos, photographs, and patient consent. BMJ 1998;316:1009-11. 8. Omonzejele P. Obligation of non-maleficence: moral dilemma in physician-patient relationships. 2005;1:22. 9. Institute of Medical Photographers. National Photography Guidelines. IMI Web site. Available at: http://www.imi.org.uk/natguidelines/ guidelines01.asp Accessed December 21, 2010.
10. Paterick TJ, Carson GV, Allen MC, Patrick TE. Medical informed consent: general considerations for the physician. Mayo Clin Proc 2008;83:313-9. 11. Committee, American College of Medical Genetics. Informed consent for medical photographs. Genet Med 2000;2:353. 12. Opinions of the Medical Board of Victoria, Bulletin 2008; 2. Available at: http://www.medicalboardvic.org.au/pdf/vol2_2008.pdf. Accessed December 12, 2010. 13. Wiedemann LA. Using clinical photos in EHRs. J AHIMA 2010;81: 44-5. 14. Berle I. Clinical photography and patient rights: the need for orthopraxy. J Med Ethics 2008;34:89-92. 15. Franchitto N, Gavarri L, Dédouit F, et al. Photography, patient consent and scientific publications: medicolegal aspects in France. J Forensic Leg Med 2008;15:210-2. 16. Creighton S, Alderson J, Brown S, et al. Medical photography: ethics, consent and the intersex patient. BJU Int 2002;89:67-71 [discussion 71-2]. 17. International Committee of Medical Journal Editors. Protection of patients' right to privacy. BMJ 1995;311:1272. 18. Lau CK, Schumacher HH, Irwin MS. Patients' perception of medical photography. J Plast Reconstr Aesthet Surg 2010;63:507-11. 19. Institute of Medical Illustrators. IMI National Guidelines: the use of chaperones in clinical photography. IMI Web site. Available at: http:// www.imi.org.uk/natguidelines/IMINatGuidelinesChaperonesMarch2006.pdf. Accessed November 15, 2010.
Ethical considerations in dermatologic photography Nikita Lakdawala, MSIII, Demian Fontanella, JD, CMA, Jane M. Grant-Kels, MD ⁎ Department of Dermatology, University of Connecticut Health Center, 21 South Road, Farmington, CT 06030-6231, USA
Abstract In dermatology, clinical photographs are an essential component of patient care, enabling clinicians to document changes in skin pathology over time. Recent advances in digital technology and the electronic medical record have revolutionized clinical photography; however, these advances bring with them new ethical, legal, and social concerns. Photographs, more than other forms of documentation, have the potential to make patients uncomfortable. The act of photography, especially for those images requiring exposure of the genital area or the entire body, can be an uncomfortable experience for patients, necessitating the clinician and photographer to take an empathic stance in this setting. The Internet has elicited an increasing, and a very real, concern for patients about possible distribution and use of images outside of their individual care. The clinician and staff can allay these fears by professionally and empathetically addressing their concerns. In addition, it is important that patients receive appropriate informed consent about clinical photographs and the potential use of the images in their care, education, and research. Given the multitude of methods for recording clinical photographs, combined with the increasing complexity of image storage, standardization becomes a critical tool in providing consistency among images and achieving more equitable and efficacious care. To achieve this goal and improve the baseline standard of continuity of care for dermatological practices, we review the role of photographs, develop a model for patient consent, and establish standards for photography so as to provide the most ethical care for the patient. © 2012 Elsevier Inc. All rights reserved.
Case A 4-year-old boy was brought to a dermatologist by his mother with a referral from his pediatrician to assess a small to moderately sized congenital melanocytic nevus located in the genital area. The dermatologist discussed the possible risks of melanoma and options with the mother, including complete or partial surgical excision, and observation. Due to esthetic and functional concerns, difficulty with complete resection, and controversy in relation to the malignant potential of small and moderately sized congenital melanocytic nevi, it was decided that observation was the best option. 1,2 The lesion was then photographed and measured. After the photograph was taken as a baseline for the medical record, the mother expressed concern that the picture of her ⁎ Corresponding author. Tel.: +1 860 679 3474; fax: +1 860 679 1267. E-mail address: [email protected] (J.M. Grant-Kels). 0738-081X/$ – see front matter © 2012 Elsevier Inc. All rights reserved. doi:10.1016/j.clindermatol.2011.06.017
child's nevus included the genital area. In an Internet-based era, she feared that it could be easily “disseminated”. Without including the genital region, the melanocytic lesion could not be accurately captured, and thus, adequately monitored for future changes. The family's right to privacy and autonomy contrasted with the standard of care for observation and follow-up of the melanocytic nevus. To alleviate the mother's concerns, the first photograph was destroyed, leaving no baseline photograph for future evaluation of the young patient. Although a detailed description of the congenital melanocytic nevus was included in the medical record, it could not replicate the diagnostic and follow-up benefit from a simple, single picture.
Introduction In dermatology, a picture really is worth a thousand words. Illustrations of dermatological conditions have been
Ethical considerations in dermatologic photography used for centuries, with some of the earliest dating back to the 14th century when syphilis was rampant in Europe. 3 As constant improvements in imaging technology and software continue to augment our diagnostic and treatment capabilities, with increased image resolution and total body photography systems, a patient's right to privacy and ethical treatment may be compromised in ways that have never before been plausible. 4 Dermatological photographs are crucial tools in tracking the progression of skin lesions, with implications for general dermatology, cosmetic dermatology, and dermatologic surgery. Total body photography can help the dermatologist detect new lesions or even minute changes in existing melanocytic nevi. 5 This can decrease patient and physician anxiety about adequate detection of changes in melanocytic nevi, reduce biopsies, and, most importantly, promote early identification and treatment of melanoma. 5,6 However, despite its clear benefits, the digital era also brings a myriad of legal, ethical, and psychosocial challenges. The ease with which digital images can be distributed for medical education, publication in textbooks, journals, and via the Internet; and the advent of the electronic medical record (EMR) expose patient photographs and privacy to a greater degree of risk than ever before. 7 How can we balance the obvious medical benefit patients receive through the use of digital imaging with their right and expectation of confidentiality and privacy? Meticulous attention to the principles and elements of informed consent, clear, uniform standards for the recording, storage, and dissemination of the images; and an empathetic perspective of each patient's fears of the use of these photographs represent a good beginning in the professional and ethical management of their care.
The right to privacy and informed consent The principles of the patient-physician relationship are well established—beneficence, integrity, fidelity, confidentiality, and more. 8 Chief among these is the concept of patient autonomy, whereby each patient maintains control over his or her body and decisions affecting his or her medical care. An important means of ensuring that each patient remains an educated partner with the physician in their care is the doctrine of informed medical consent. This process provides a legal and ethical framework within which the patient-physician relationship can operate. The increasing prevalence and use of clinical photography as an important diagnostic tool, in addition to its function as an educational device, requires its incorporation into and a corresponding evolution of the consent process to adequately account for its inherent complexities. There has been much debate and analysis in Europe assessing the legal and ethical aspects of clinical photography, with countless national advisory boards continually reviewing and updating recommended protocols 9; however, in the United States there has yet to be a serious, systematic look at this issue.
487 The intent of the medical informed consent process is to certify that the physician has educated the patient about the proposed treatment, any alternatives, and the associated risks and benefits of each. Within the medical-surgical context, this is relatively straightforward—treatment options are generally known, as are the related risks. Applying the informed consent doctrine to clinical photography introduces a measure of uncertainty concerning the form and degree of risk associated with the process. When a patient consents to the excisional removal of a malignancy, the benefit is clear and any risks will likely manifest during a finite period and within the parameters of the consent. The risk is known and is unlikely to change once the procedure has been completed. Clinical photographs, conversely, exist in a dynamic environment, as do the associated risks. Risk may be legally defined as exposure to a possibility of injury or loss and is composed of 2 primary elements: (1) the likelihood of an injury or loss occurring and (2) the actual injury or loss. 10 The primary risk, or likelihood of injury, associated with the use of clinical photographs is unauthorized disclosure or dissemination of the images. As part of the medical record, photographs are subject to the same safeguards as other elements of the record, consent and confidentiality included. 11 A patient's agreement to be treated represents implicit consent to a physician's use and maintenance of his or her medical record, oftentimes including the possibility of publication. Despite this, the patient's risk for a loss of privacy from a physician's use of written or dictated medical notes is far different from that represented by clinical photographs. Although de-identification of patient information in writing is extremely easy, as physicians may omit the use of a name, or use pseudonyms, and other readily identifiable information, the visual nature of photographs brings a new level of uncertainty concerning the physician's ability to protect the patient's confidentiality. The evolution and incorporation of information management and technology into medical practice, the increasing use of EMRs, and the prevalence of lapses in security all play an important role in the assessment of risk of clinical photography as a diagnostic tool. Without digital imaging, clinicians, and correspondingly the patient, would be at a disadvantage in the professional and ethical management of the disease process. The clinician's moral, legal, and ethical obligation to discuss the risks of digital imaging must include all reasonably foreseeable adverse outcomes, else the patient's ability to truly give informed consent may be called into question. How far must clinicians go in attempting to educate their patients about the risks of using clinical photography in their care? At minimum, the consent must include a clear understanding of the purpose of the photography, the risks of failure to consent to them, and an explanation of the security and confidentiality of the photographs. 12 Beyond this basic information, it is critical that the patient understand several key elements: (1) that their treatment
488 will in no way be affected by their refusal to consent, (2) that they may withdraw their consent for any or all use of the images at any time, and, most importantly, (3) that once the images have been published, either through publication or education, they are a part of the public domain and may be impossible to remove. Historically, physicians have attempted to account for this inherent risk through deidentifying patients, but it is most difficult to truly know what would be an identifying characteristic for each patient. Modifying the photograph by blocking the patient's eyes or any obviously identifying marks (as a melanocytic nevus, hemangioma, or tattoo) is not absolute. Even in those instances where every attempt is made to de-identify the patient, it is important to fully consent patients so that they have awareness of and choice in participating in the risk. Although possible and most practical to include consent for clinical photography within the standard clinical consent for a procedure, it is strongly recommended that an independent consent is used. This consent should clearly identify the subject matter of the photograph and allow the patient to choose how the photographs will be used, differentiating for use in the clinical record, for education, and for publication 13 (Appendices A and B). Another component of consent in clinical photography arises when the patient is a minor, or is incapable of providing informed, legal consent. In most cases, obtaining consent will not be complicated but, as in the case study at the beginning of this paper, in some instances a patient's or the parents' level of discomfort with the clinical photographic record may be at odds with its diagnostic benefit. Although the same principles apply when consenting a minor, there is an additional component to be cognizant of. Once minors reach majority, or patients gain capacity, they attain the right to withdraw consent at any time. In the case of a 4-year-old, this is less likely to be as problematic as with an older child, who may have opposed the initial photography. By including the minor in the consent decision, as much as is reasonable dependent upon their age, the physician can simultaneously promote a positive relationship with the patient and increase the child's participation in his or her own medical decisions, minimizing the chance that he or she will later withdraw consent. The zealous maintenance of the patient's right to privacy requires that clinical photographs remain secure and confidential. Impending advances in EMR management, in conjunction with a legislative movement toward total EMR, potentially jeopardize that safety. The intent of digitizing patient records is to increase the efficiency and decrease the cost of medicine. Through easier clinical access to patient records, physicians may be able to instantly view a patient's medical history, diminishing the prospect of mistreatment, or redundant treatment, because of a lack of information. The mechanisms that will make possible this technological leap have yet to be finalized, but concerns over unnecessary access to patient records remain at the forefront of the debate. Until we have a clearer understanding about how and to what degree patient records will be secured, and how access will
N. Lakdawala et al. be limited, it is important to realize that patient fears of unwanted dissemination of potentially intimate or unflattering photographs are valid and warrant consideration.
Standardization/Security of medical photography As use of digital photography as an integral part of the patient's treatment continues to grow, so does the need for a degree of uniformity in how those photographs are recorded. Despite the inherent risks in EMR, the ability to have easy access to high-quality digital images of patients' lesions can increase detection of malignancies at a much higher rate and at much earlier stages than ever before. Failure to record these images in a consistent manner has the potential to result in (1) harm to the patient, (2) ethical concerns regarding patient privacy and confidentiality, and (3) potential liability for the physician. The increasing prevalence of total body imaging systems and software, where patients with large numbers of lesions have their entire cutaneous surface photographed, has resulted in effective and standardized systems to capture and store clinical photographs. Total body photography (TBP) has gained popularity over time with approximately 40% of academic centers using this modality in 1992 to just over two-thirds in 2002. 5 Academic institutions and private practices use TBP with the goal of reducing the number of biopsies required and yet be able to detect melanoma at its earlier stages. 5 Total body mapping requires that the patient's skin is photographed in a predetermined pattern, with the same settings, in a controlled environment. This degree of precision permits very accurate comparisons of individual lesions over time, making even minute changes detectible. In follow-up visits, patients reproduce the poses with the original image set serving as a reference point so that the physician may compare. Unfortunately, this degree of standardization does not exist in all clinical environments. Images are recorded using camera phones, small point-and-shoot cameras, or larger SLR cameras. Subsequently the resolution at which each image is recorded will vary, as will the lighting, distance, orientation, and inclusion of landmarks for later identification. Although the use of digital imaging has tremendous potential to enhance early diagnosis of malignancies before they become dangerous, without consistency and standardization in the use of digital imaging as a diagnostic tool, many lesions will go undetected merely because no practical comparison can be made with prior studies. As digital imaging becomes more accepted as a diagnostic tool, much like routine labs or radiological studies, patients will come to expect a greater level of accuracy and reliability in these images. In Europe, national protocols exist that establish clinical photographic standards and accounting for professional clinical photographers. 14 Although this practice is followed in some practices in the United States, it is the
Ethical considerations in dermatologic photography exception. Realistically, the inclusion of a dedicated clinical photographer, with a controlled area for recording the images, is impractical and cost prohibitive; nevertheless, even staff without technological savvy can easily be trained to take photographs in a consistent manner, so long as certain basic considerations are accounted for. Consistent lighting, generally through the use of a ring flash, will provide consistency in coloration of the area. Standard distances from the lesion, or in some cases, a set range of distances, preset aperture and shutter settings, and some means of identifying size are also important criteria for equitable comparison.
Explicit photography Within the realm of medical photography, genital and full-body photography merits separate attention. In discussions of medical photography, it has been said that “the photograph generates an ambiguous relationship with the idea of identity. It can in turn lay it bare, exploit it, reveal and embody it. It creates an image which takes on its own existence separately from the person portrayed.” 15 Although most patients do not project a strong sense of self-identity upon any single medical photograph, the likelihood of this is greater with imaging of intimate areas such as the breasts, genitals, or more extensive naked areas of the body. It is, therefore, important that we consider the psychological impact of both the act of photography and the photograph itself in relation to this specific subset of images. Patient responses to photography will inevitably vary depending on their medical condition, age, sex, and the environment in which they are photographed 16 ; however, established standards in medical imaging can protect the patient's privacy, foster trust and security with the providers, and minimize the amount of distress for the patient. 16 Although the body of literature discussing the psychological and emotional impact of photography is sparse, one extreme but illustrative example of this dates back to the 1960s, when several full body images of “intersex” women were included in a British journal in reviewing complete androgen insensitivity (CAIS) without prior consent from the patients' parents. 16 Years later, in another journal, two of these women had the opportunity to speak about the sense of humiliation and shame they had felt in finding their photographs from years past in published literature. Negative associations and stigma associated with their condition affected the patients' view of photography, making them feel objectified and diminished. 16 One woman, only 3 years old when the photographs were taken, discussed that her facial expression in the published photographs showed the trauma she experienced and expressed an inability to find justification for inclusion of full-body naked images in her medical record or in the journals other than for a “spectacle.” 16 This situation highlighted the multidimensional ethical dilemmas in clinical photography and the need for discussion with patient and family before any imaging.
489 Although it occurred decades earlier, the issues in this case bear resemblance to those in the anecdotal case at the beginning of this article. Both pertain to pediatric patients where medical photographs were obtained and the mothers' concerns were elicited after the fact. As photography of the genital area can be a stressful experience for parent and child, educating them about the procedure can help them to anticipate the process and, thereby, partially alleviate related anxiety. A less than optimal experience with any aspect of care, including photography, for the patient or the family may ultimately reflect on the clinician, affecting the patient's confidence and creating a barrier for patient care. Informed consent, including a discussion of the medical necessity, storage, and uses of the photography can also help to obviate the very real concerns of “dissemination” with digital imaging. In fact, it has been shown that engaging the full discussion about the implications of imaging does not prevent most patients from agreeing to medical photography. 7 These cases illustrate the importance that must be given to minimize the number of identifiable features included in the photograph. A patient's face is easily the most identifiable anatomical feature, and should be avoided if possible. Although modifying the image to block irrelevant features may help preserve a patient's privacy, it does not preclude the possibility that he or she may be recognized. 17 Scars, melanocytic nevi, other birthmarks, and even tattoos are especially recognizable to those familiar with the patient and cannot always be avoided. In fact, these identifiable regions may be the lesions requiring documentation; therefore, it is important that the smallest area possible be recorded so as to reduce identifiers, while maintaining the diagnostic integrity of the photograph. Total body imaging embodies the full spectrum of medical, legal, ethical, and diagnostic issues that clinicians will encounter. Although patients value TBP as an important part of their care, sensitivity to the process needs to be displayed in the clinical setting. Despite the clear benefits of TBP, many patients are uncomfortable and embarrassed about being photographed naked. Most often, it is a member of the staff rather than the clinician who takes the photographs, and although it is important for the staff member to be aware of the consent process, the ultimate responsibility for obtaining a patient's consent falls to the physician. As the primary patient contact, the clinical staff must be respectful of patients' privacy and cognizant of their concerns, in addition to demonstrating confidence and competence as the photographer. There are several fairly simple elements that can help to preserve a patient's level of comfort during this process: (1) full informed consent; (2) standard professional, comfortable, and private environment in which to take the photograph; (3) staff who have an appreciation for the patient's concerns; (4) use of gender-appropriate chaperones when necessary; (5) minimal body exposure at the time photography; (6) minimization of the area of the
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body being photographed; (7) avoidance of inclusion of the face unless necessary. 7 Adherence to these principles can give the patient a feeling of being understood and respected and may help to achieve better compliance with initial photography. 18,19
Conclusions Improvements in digital imaging technology have enhanced the efficiency in taking photographs and the resolution of medical images. It has become an invaluable asset in many fields, but especially in dermatology, it has become the “standard of care” offering the most benign and effective methodology to observe progression of dermatologic lesions over time and assess surgical and cosmetic outcomes. As imaging continuously evolves, we must also simultaneously reevaluate the protocol for consent for medical photography so as to appropriately inform the patient. Fully informed written consent for images, identifiable and nonidentifiable, is required. The specific uses of the images, whether for the medical record, for educational purposes, or for publication, should be discussed with the
patients and appropriately documented in the consent form. We also must address how to best store, protect, and use images with the advent of the EMR. Finally, photographers should be trained in the consent process, in imaging with standards of reference to distance, size, and location, and in recognizing patient concerns with special attention to photography of intimate areas of the body. With the EMR, an additional layer of consent is required for patients because of the increased risk that images may be accessed by others. Europe has made great strides in considering the ethics and legality of videos and photographs in medicine and has formulated models for physicians across all fields to follow. 14,15,17 Their models serve as a reminder for us to begin our discussions as digital photography becomes a standard documentation tool in dermatology. Thus, before we take out our smartphones or digital cameras to capture interesting findings that abound in a typical day in the clinic, we should take a step back to consider the paradigm that we have already adopted: that patients are the owners of their images and that we must protect their right to autonomy and privacy. 15,17 In doing so, patients will hopefully accept imaging as part of their ethical care and trust that these images will be used appropriately.
Appendix A. Standard consent Consent for Clinical Photography I, ______________________, agree to permit medical photographs to be taken of me. By signing, I acknowledge that the terms of this consent have been explained to me in a clear and understandable manner. I am aware that the photographs will become a part of my medical record, and may also be used for medical teaching, or published in medical textbooks or journals, dependent upon the authorization I provide below. I am aware that refusal to agree to permit medical photographs to be taken of me will in no way affect the medical care that will be provided to me. I further acknowledge that consenting to have photographs taken of me in no way entitles me to any form of compensation from their potential future use. In addition, I understand that I may withdraw or modify this consent at any time, with the realization that once these images are published, either in written or electronic format, they will remain a part of the public domain despite any modifications I may choose to make. 1) I agree that these photographs may be used for teaching purposes, as well as become a part of my medical record. In addition, I consent to the use of these photographs in medical publications, including medical textbooks, journals and electronic media. I am aware that members of the general public may view these images, as well as medical researchers, professionals, and scientists. Despite assurances that every effort will be made to remove any identifying elements from the photographs, I acknowledge that it is possible that someone may recognize me. _________________________ _________________________ _________ Patient/ _____________ Witness Date 2) I consent to the use of these photographs as a part of my medical record and for teaching, but NOT for medical publication in any format. _________________________ _________________________ _________ Patient/ _____________ Witness Date 3) I agree that these photographs shall be used only as a part of my medical record. _________________________ _________________________ _________ Patient/ _____________ Witness Date
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These images will be stored and/or utilized in the following location(s): ____________________________________________ ____________________________________________________________________________________________________ Patients ages 7 through 17 years old: I understand the terms above, and also understand that I may withdraw this consent once I reach 18 years of age. Print Name: _______________________ Date: ________ Sign Name: ______________________
Appendix B. Short form consent Consent for Clinical Photography I, ______________________, agree to permit medical photographs to be taken of me and acknowledge that the terms of this consent have been explained to me in a clear and understandable manner. Each section signed by me indicates my consent to the use described within that clause. I am aware that publication may result in members of the general public viewing these images. Patient: __________________ Date: __________ Patient: __________________ Date: __________ Patient: __________________ Date: __________
1) I agree that these photographs shall be used as a part of my medical record. 2) I agree that these photographs may be used for teaching purposes. 3) I consent to the use of these photographs in medical publications, including medical textbooks, journals, and electronic media.
Witness: ____________________ Date: __________ These images will be stored and/or utilized in the following location(s): ______________________________________ ______________________________________ Patients ages 7 through 17 years old: I understand the terms above, and also understand that I may withdraw this consent once I reach 18 years of age. Print Name: _______________________ Date: ________ Sign Name: ______________________
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