Text of opioid bill released by House Ways and Means Committee: 42 CFR Part 2 is spared

Last week, the long‐awaited opioid package was released by the House of Representatives Ways and Means Committee. Notably, 42 CFR Part 2, which the House version had slated for elimination but the Senate had not addressed, is spared. The confidentiality regulation, which requires substance use treatment providers to obtain consent from patients before releasing their information, would have been replaced with the Health Insurance Portability and Accountability Act (HIPAA), which would have included their information in their record.     

As HIPAA changes loom,patients demand continued confidentiality for SUD records

In last week's issue, we wrote about the plans by the federal Department of Health and Human Services (HHS) to weaken the Health Insurance Portability and Accountability Act (HIPAA), citing regulatory burdens and the need for information‐sharing (see ADAW, Jan. 21). The plans, detailed in a request for information (RFI) issued Dec. 12, throw a wrench into the plans by the “make 42 CFR Part 2 like HIPAA” movement, which would erase the federal confidentiality regulation protecting substance use disorder (SUD) treatment records by watering it down to HIPAA standards. Now, with even HIPAA seeming too burdensome, the need is even greater to protect the consent provision of 42 CFR Part 2 — which is basically all that's left after the Substance Abuse and Mental Health Services Administration (SAMHSA) allowed information‐sharing for the vague “health care operations” without consent last year (see ADAW, Jan. 8, 2018). Last week, H. Westley Clark, M.D., J.D., dean's executive professor at Santa Clara University and former director of the Center for Substance Abuse Treatment at the Substance Abuse and Mental Health Services Administration, made this abundantly clear in his comments to ADAW.     

42 CFR Part 2 final rule: OTP input into PDMP,more enforcement and easier

The final rule “modernizing” the country's confidentiality regulation, which originally required treatment providers to obtain patients' consent in writing to the release of their substance use disorder (SUD) treatment information, was published last week. Consent for release of information would apply to a broad category of health care operations, care coordination and case management. And methadone patients could have their treatment information put into state data systems; since 2011, that has not been allowed. Finally, the freedom of law enforcement to place and use confidential informants inside treatment programs has been expanded.     

Informed Consent in the Twenty‐First Century: What It Is,What It Isn't,and Future Challenges in Informed Consent and Shared Decision Making

Consent evolved from judge‐made law in Great Britain in 1767. The term informed consent entered the judicial lexicon in 1957. The first court case to articulate a reasonable person standard adopted by the high courts in Canada and Australia was heard in the U.S. in 1972. Today, informed consent continues to develop in four areas: (i) the court‐based doctrines of consent and informed consent in clinical care in judge‐made law; (ii) federal regulations related to research on human study participants; (iii) shared decision making adopted by care organizations and medical societies in the US, Canada, and Europe; and (iv) areas including decision analysis, discourse analysis, ethics, linguistic analysis, patient–physician communication, risk and evidence communication, and social theory. In this paper, we will focus on consent and informed consent in the first part of the twenty‐first century. We will examine a range of information and decision making frameworks from the oldest court‐established frameworks of consent and informed consent to recent conceptions of information and decision making in evidence‐based decision making and shared decision making in the patient–physician relationship. This paper is divided into three parts: I. What informed consent is, II. What informed consent isn't, and III. Future challenges in informed consent and shared decision making.     

The Subpoena of Ethnographic Data

This essay outlines the author's experience of having his ethnographic data subpoenaed. It outlines the challenges of subpoena's to research, and suggests four solutions: (1) Apply for and utilize the National Institutes of Health certificate of confidentiality by asking health‐related questions over the course of one's research; (2) Establish a task force that articulates clear ethical guidelines for ethnographic research, with attention to the conditions wherein ethnographers can break confidentiality (and might also comply with subpoenas). These ethical guidelines should then be made clear to research subjects as a part of informed consent processes; (3) Demand that institutions (institutional review boards) that require confidentiality as a condition of research be required to defend that confidentiality through the office of the general counsel; (4) Socialize the cost of subpoenas, wherein scholars can be part of an insurance pool that will defend them in the event of a subpoena and thereby defend the general enterprise of ethnographic research.     

Producing and Using Video Data in the Early Years: Ethical Questions and Practical Consequences in Research with Young Children

This article considers ethical questions and practical challenges arising from the production of video data with young children, and suggests that such considerations are reciprocal and that video data should be seen as constructed collaboratively by all participants. Video data can be a valuable means of eliciting children’s perspectives, but it raises particular issues of consent and confidentiality. Opportunities for young children to use video cameras are helpful in supporting informed consent and active participation, whilst the visual nature of video renders anonymity and confidentiality more difficult, and anonymisation of images may impact upon data quality. Video, like all research data, is influenced by the actions and biases of participants, and young children’s experiences as consumers of television will influence their reading of, and responses to, video data. An advantage of video is that it can provide participants with feedback about their participation. Challenges remain with regard to ownership.     

CARES Act eliminates most of 42 CFR Part 2

It's been more than 10 years of patients fighting for 42 CFR Part 2, but overnight the regulation lost to COVID‐19. The CARES Act revises 42 CFR Part 2 (confidentiality of substance use disorder [SUD] patient records), eliminating consent except for the first time only, after which the information is up for grabs.     

The Relation Between Peer Victimization and Adolescents' Well‐Being: The Moderating Role of Ethnicity Within Context

This study examined the moderating effects of individual ethnicity and school ethnic composition on the relation between peer victimization and adolescents' well‐being. Participants were 4,593 sixth grade students attending 36 schools categorized as ethnically diverse or predominantly African American, European American, or Latino American. Multilevel models revealed relations between participants' ethnicity and their reported frequency of overt but not relational victimization. Findings did not support the hypothesis that adolescents in the minority group in their school would be more frequently victimized than adolescents in the majority group. Furthermore, contrary to hypothesis, the relation between the reported frequency of victimization and well‐being did not vary as a function of the interaction between adolescents' ethnicity and their schools' ethnic composition.     

Negotiating Informed Consent with Children in School‐Based Research: A Critical Review

The methods literature on research with children recognises the challenges of negotiating informed consent with this group. Special ‘child‐friendly’ techniques are advocated to overcome these challenges. We argue that, upon closer inspection, research with children foregrounds more fundamental problems with informed consent that are not easily resolved. Drawing from three ethical texts commonly consulted in our own research fields, we highlight problems of information, understanding, authority, capacity and voluntarity. We conclude that informed consent is more problematic than is generally admitted, and that researchers would benefit from more openly acknowledging its limitations.     

Perspectives of the National Disability Insurance Scheme: participants’ knowledge and expectations of the scheme

Limited research investigates future participants’ perspectives of the National Disability Insurance Scheme (NDIS) – Australia’s first national attempt towards self-directed disability service provision. To identify future participants’ perspectives, seventy people with disability in South-East Queensland participated in an interview. Over half the participants demonstrated having little to no knowledge of the NDIS. Participants’ expected that: (i) they would make decisions around organising and paying support and (ii) that their current service provider would provide the support. Participants also indicated that training around budgeting and hiring would be essential to ensure their successfully engagement with the NDIS. The findings are timely and provide a first-hand account of how people with disability intend to engage with self-directed support programs. Findings also imply that targeted information dissemination and participant training and support are necessary to ensure their successful participation within self-directed programs.     

The Management of Confidentiality and Anonymity in Social Research

This article explores the ways in which social researchers manage issues of confidentiality and the contexts in which deliberate and accidental disclosures occur. The data are drawn from a qualitative study of social researchers’ practices in relation to informed consent. It comprised 31 individual interviews and six focus groups as well as invited email responses with researchers working with vulnerable groups or with an interest in research ethics. Researchers reported feeling compelled to break confidentiality when participants were perceived as being at risk of harm but not in cases of involvement in illegal activity. Situations in which accidental disclosures occurred were also identified. Researchers reported varying ways in which they protected the confidentiality of their participants in the dissemination of their research, including omitting data and changing key characteristics of participants. The implications of researchers’ practices on data integrity and relationships with participants are discussed.     

Informed Consent Agreements: Standards of Care for Digital Social Work Practices

The inclusion of remote digital practices (e-mail, texting, blogging, social media) to deliver social work services raises unique ethical and legal challenges for client and practitioner. Competent care necessitates providing clients with information that would materially affect clients’ decisions whether to assume the risks, benefits, and conditions associated with e-practices. As standards of care for distance service provision have not been firmly established, social workers are duty bound to be well-informed about current laws, duties, and obligations including specific rules governing the practice of social work in the states where they deliver remote services. This article identifies distinct threats to privacy and confidentiality associated with e-practices and offers suggested content for a comprehensive informed consent policy.     

Peer Influence on Prosocial Behavior in Adolescence

Adolescence is a time of increased sensitivity to peer influence, which creates vulnerabilities but also opportunities. In this study, we examined the influence of peers on prosocial behavior in 12‐ to 16‐year‐old adolescents (N = 197). We utilized a public goods game in which participants made decisions about the allocation of coins between themselves and the group. Participants received manipulated peer feedback on a subset of decisions. Results indicate a significant interaction between feedback condition (prosocial, antisocial, or no feedback) and allocation choices: Prosocial behavior increased after prosocial feedback and decreased after antisocial feedback. These findings support the idea that peer influence creates not only vulnerabilities, but also opportunities for healthy prosocial development and social adjustment learning.     

What Parents Learn From Experience: The First Child as a First Draft?

This study sought evidence for the proposition that experiences with earlier‐born adolescents will improve parents' interactions with and parenting of later‐born adolescents. Participants were mothers, fathers, and both first‐ and second‐born siblings from 392 families participating in a longitudinal study. To collect information on siblings' family experiences, family members were interviewed individually in their homes. During the subsequent 2 to 3 weeks, 7 evening telephone interviews were also conducted, which focused on siblings' daily activities. Findings suggest that when parent‐adolescent relationships were measured at the same age for both siblings, parents experienced less conflict with their second‐born as compared with their firstborn adolescent offspring and exhibited greater knowledge of their second‐born offspring's daily activities as compared with their firstborns' daily experiences. These results are consistent with the notion that parents may learn from their childrearing experiences.     

Self‐Perceived Competence in Mainland China: A Multiwave Longitudinal Examination of Internalizing Symptoms in Chinese Adolescents

The present 9‐wave, 2‐year study examined whether Cole's (1991) theory of self‐perceived competence could help explain vulnerability to depressive and anxiety symptoms in a sample of adolescents from mainland China. Participants included 624 adolescents (319 females and 305 males) from an urban school in Changsha (n = 308) and from a rural school in Liuyang (n = 316). Findings showed that self‐perceived academic competence was negatively associated with prospective depressive and anxiety symptoms. Meanwhile, adolescents with low levels of self‐perceived social competence were at heightened risk for depressive symptoms during times of increased stressors (supporting a vulnerability‐stress model). These findings advance past research by highlighting new developmental pathways for depressive and anxiety symptoms in Chinese adolescents.     

Stimulus package includes 42 CFR Part 2 provisions

The language in the stimulus package, as of March 26, revises 42 CFR Part 2 (confidentiality of substance use disorder patient records requiring patient consent before release), eliminating the consent provisions – allowing patients to give consent only once: “it shall be permissible for a patient's prior written consent to be given once for all such future uses or disclosures for purposes of treatment, payment, and health care operations, until such time as the patient revokes such consent in writing.”While not full alignment with the Health Insurance Portability and Accountability Act (HIPAA), it is bad news for confidentiality. Many programs probably require consent before admitting patients to treatment. The vague “health care operations” is included as a party that can get information redisclosed. If the House and the President signs off, the new law goes into effect immediately. H. Westley Clark, M.D., J.D., Dean's Executive Professor at Santa Clara University and former director of the Center for Substance Abuse Treatment at the Substance Abuse and Mental Health Services Administration said the pending NPRM on 42 CFR Part 2 from SAMHSA should be suspended, that 42 CFR Part 2 should be formally moved from SAMHSA to the Office of Civil Rights (OCR) of the Department of Health and Human Services since OCR has the function to collect data, monitor breaches, and impose penalties.” In addition, stakeholders should “ask what the new 42 CFR part 2 look like with the proposed changes which include the consent provisions, the breach notification provisions, the penalty provisions and all the other bells and whistles.” The bill was passed unanimously by the Senate March 25, and was scheduled to go to the House of Representatives for a vote March 27, after which President Trump was expected to sign it.     

A qualitative study investigating adolescents' understanding of aggression,bullying and violence

There is a general consistency across the research literature regarding the definition of bullying. This has filtered down into the construction of governmental and school anti-bullying policies around the world. However, research suggests that children and adolescents are failing to accurately identify cases of bullying. This in turn has implications upon the accuracy of our perception of the extent of the problem of bullying within schools. The current study aimed to investigate how 11–17 year olds understand and differentiate between terms relating to interpersonal peer aggression, violence and bullying. Fifty-seven (twenty male, thirty-seven female) participants were recruited via an opportunity sample. Participants took part in focus group interviews within which they were asked to provide a definition for a list of words relating to both traditional and cyber forms of aggression, bullying and violence. Thematic analysis revealed that the participants held a shared understanding of the terms relating to aggression, bullying and violence. Participants defined each term by describing the behaviors involved, their perception of the level of control the perpetrators of each type of negative peer interaction have and the perception of those involved. The implications of these findings for both policy and future research are discussed.     

What college students do not know: where are the gaps in sexual health knowledge?

Abstract Objective: This study aimed to understand the gaps in college students' knowledge regarding sexual health information. Participants: A sample of 242 participants enrolled in an introductory college course participated in this study in the Fall 2009 semester. Methods: Students participated in 1 of 2 brief interventions and wrote a response paper about their experience. The papers were analyzed using conventional content analysis for information that was new to participants by looking for key words that suggested learning took place. Results: The findings indicated that the majority of participants learned new information. Most learning occurred regarding sexually transmitted infections (ie, types, symptoms, prevalence, treatment, testing) and correct condom use. There were also demographic differences regarding reported new information. Conclusions: Findings can be used to develop future sex education programs for college students by providing college educators with an understanding of where students lack knowledge of sexual health.     

Help-seeking and help-offering for teen dating violence among acculturating Mexican American adolescents

Help-seeking sources, motivations, and barriers concerning teen dating violence are rarely co-examined alongside help-offering processes and messages, and both are understudied among minority youth populations. This study sought the perspectives of Mexican American adolescents (ages 15 to 17) concerning their preferences and experiences with both help-seeking and help-offering. Twenty focus groups (N = 64 adolescents) were divided by gender and by acculturation level to allow for group comparisons. Friends and supportive family members were primary sources of help, although adolescents voiced a number of barriers to help-seeking. The most prominent barrier was fear they would be told to leave the relationship, an anticipated message that aligned with their tendency to tell others to do so. Help-seeking was viewed as a weakness, and help-offering was reserved for friends that asked for it. Recommendations for programs and practice with youth include promoting culturally and gender attuned teen dating violence services that emphasize confidentiality, and working at the family, peer, and school levels to foster healthy relationships.