The new science of genomics endeavors to chart the genomes of individuals around the world, with the dual goals of understanding the role genetic factors play in human health and solving problems of disease and disability. From the perspective of indigenous peoples and developing countries, the promises and perils of genomic science appear against a backdrop of global health disparity and political vulnerability. These conditions pose a dilemma for many communities when attempting to decide about participating in genomic research or any other biomedical research. Genomic research offers the possibility of improved technologies for managing the acute and chronic diseases that plague their members. Yet, the history of particularly biomedical research among people in indigenous and developing nations offers salient examples of unethical practice, misuse of data, and failed promises. This dilemma creates risks for communities who decide either to participate or not to participate in genomic science research. Some argue that the history of poor scientific practice justifies refusal to join genomic research projects. Others argue that disease poses such great threats to the well‐being of people in indigenous communities and developing nations that not participating in genomic research risks irrevocable harm. Thus, some communities particularly among indigenous peoples have declined to participate as subjects in genomic research. At the same time, some communities have begun developing new guidelines, procedures, and practices for engaging with the scientific community that offer opportunities to bridge the gap between genomic science and indigenous and/or developing communities. Four new approaches warrant special attention and further support: consulting with local communities; negotiating the complexities of consent; training members of local communities in science and health care; and training scientists to work with indigenous communities. Implicit is a new definition of “rigorous scientific research,” one that includes both community development and scientific progress as legitimate objectives of genomic research. Innovative translational research is needed to develop practical, mutually acceptable methods for crossing the divide between genomic researchers and indigenous communities. This may mean the difference between success and failure in genomic science, and in improving health for all peoples.

Summary Geographically dispersed patients, inconsistent treatment tracking, and limited infrastructure slow research for many orphan diseases. We assess the feasibility of a patient-powered study design to overcome these challenges for Castleman disease, a rare hematologic disorder. Here, we report initial results from the ACCELERATE natural history registry. ACCELERATE includes a traditional physician-reported arm and a patient-powered arm, which enables patients to directly contribute medical data and biospecimens. This study design enables successful enrollment, with the 5-year minimum enrollment goal being met in 2 years. A median of 683 clinical, laboratory, and imaging data elements are captured per patient in the patient-powered arm compared with 37 in the physician-reported arm. These data reveal subgrouping characteristics, identify off-label treatments, support treatment guidelines, and are used in 17 clinical and translational studies. This feasibility study demonstrates that the direct-to-patient design is effective for collecting natural history data and biospecimens, tracking therapies, and providing critical research infrastructure.

This paper contains an examination of how we identify and describe American Indians and Alaska Natives (AIAN) people, present what we know and discuss how we can develop measures to better improve policies and programs that affect the AIAN people and improve their lives. Specifically, this paper consists what we know about health and socio-demographic characteristics profiles and discussions of current and emerging issues. This paper was written almost entirely by Indigenous people and is an attempt to present research by us and for us, rather than to us.

Indigenous people are distinct groups where a larger population grown up around their original place exerts political dominion over the original people. Statistical measures formulated as data are foundational to public decision making. In this journal issue on Indigenous identity, historic and contemporary circumstances reveal how measurement and lived experience translates into data. Examples represent global Indigenous diversity. Key themes examined are 1) operational definitions 2) why selecting what to measure and how to measure is relevant to Indigenous meaning as well as to serve with reasonable utility as subgroup data 3) invisibility as a common problem for Indigenous people consequent to insufficient measurement methods and political inaction 4) how to understand data comparison and 5) the ways in which political recognition and rights are embedded in measurement strategy. Identity rooted in a place shaped Indigenous culture just as evolutionary biology shaped Indigenous people's physical traits. Accordingly, Indigenous identity involves land claims, jurisdictional reach, and restitution. Agreements and tensions affect individuals. Therefore, Indigenous identity is individual and collective. Some governments recognize Indigenous communities with different legal instruments and engage Indigenous in varying degrees with a government to government approach. Other governments impose definitions and data frameworks from the state on to its Indigenous population. The UN Declaration supports Indigenous people self-determination across a range of domains but most particularly about inclusion and exclusion criteria for belonging to a group. There are different ways inclusion or membership is assessed by an Indigenous group, however, all use some measure to ascertain ancestry. Unique to this collection of papers, is the predominance of people who belong to Indigenous communities and those who have worked within our communities over time which we propose is the best step to achieve useful Indigenous data.

This paper contains an examination of how we identify and describe American Indians and Alaska Natives (AIAN) people, present what we know and discuss how we can develop measures to better improve policies and programs that affect the AIAN people and improve their lives. Specifically, this paper consists what we know about health and socio-demographic characteristics profiles and discussions of current and emerging issues. This paper was written almost entirely by Indigenous people and is an attempt to present research by us, rather than for us or to us.